Wheel Power Malaysia

How To Train A Dragon

2012-01-26T14:35:00.002+08:00

Thursday January 26, 2012

How to train a dragon

Wheel Power
BY ANTHONY THANASAYAN

Zhar, the service dog, is one year old.

THIS week’s start to a brand new lunar new year may have very much symbolised a magnificent Water Dragon for followers of the Chinese zodiac calendar. However, as far as the home front was concerned, canines still reigned as champs during the holidays.

But there was no contradiction to the joyous occasion, really, because the chief star of my band of service and therapy dogs – a Doberman named Dobe Ace Zhar who celebrated his first birthday last week – is essentially a Dragon personality at heart.

I discovered this the moment Zhar joined my pack of special dogs at 10 weeks old.

Rules and regulations were generally not his strong suit. Restrictions only stifled the young Dobie’s creative sparks of enthusiasm and intelligence and he was ever ready to confront virtually any sort of challenge.

Zhar celebrates his first birthday with a cake.

Zhar accepted my wheelchair instantly.

Whilst many other dogs like German Shepherds (GSDs) and even a Golden Retriever that I’ve trained hesitated at first, or took several minutes to adjust to the movements of my wheelchair, Zhar joyfully leapt into my lap when he first saw me.

This was a very positive sign that the Dobe, whose nature – like Dragon people – is to be inevitably successful in almost everything that they do, was going to be a perfect candidate in assistance-dog work.

The “wheelchair stunt” was the start to a strong bond that we shared with each other for the next 10 months.

As a pup, he was at first a little intimidated by the larger GSDs, but got over it quickly. Zhar now towers over them but remains as gentle as a lamb.

As a true Dragon, he is generous and allows his senior canines to grab a taste of his breakfast or dinner or even clean up the leftovers from his plate.

Even at three months old, Zhar was gentle during our wheelchair walks in the neighbourhood.
He never pulls on the leash except when I need help going up a slope.

Having said that, don’t think that the Dobie is a pushover.

The utterly irrepressible (another Dragon trait) canine is alert at all times and eyes motorcycles, cars and characters that approach us suspiciously.

With a growl, he has also kept away bully Rottweilers and other dogs that put on a menacing show at the front gate of their owners’ homes when we passed by.

Zhar is naturally wary of strangers and frequently looks at me in the eye to give him the “okay” for those who approach me. With society being the way that it is today, one can never be sure about anyone, especially when it comes to total strangers.

But what Zhar excels in is his ability to retrieve almost any object.

Like Dragons, the extroverted bundle of energy is able to pick up useful items from the floor or virtually anywhere they can be found and bring them over to me.

Not only that, the Doberman loves to do it with the flamboyance of the Dragon.

Whether it is my face towel, shoes, wallet, keys, a book or even my cologne, the free-spirited and uninhibited Zhar is constantly at my service.

With the items firmly locked in his jaws, he will dash through doors, squeeze through narrow spaces, leap over obstacles (including GSDs) and even somersault if he has to – but he always lands on his feet – to get them to me intact.

So with an extremely ambitious service dog like this, I simply had to make his special day memorable.

But how does one throw a surprise birthday party for an extraordinary Doberman?

Why, with a little help from some super human friends, of course!

Two days before Chinese New Year, more than a dozen friends close to me and Zhar gathered to help blow out the candle of the Dobie’s birthday cake.

The gathering was held in the home of Dr S R Dev in Petaling Jaya where Zhar was born with his four brothers and a sister.

It is not only the present home of his mother but also where Zhar’s predecessor, Soolam my Golden Retriever, lays buried (with honours) for his lifetime work as an assistance dog for people with disabilities.

Among the dog lovers at Zhar’s party included a research scientist, a professor of genetics and a professional dog trainer. Zhar was given to me by Dr Dev.

Incidentally, Zhar’s ancestry boasts four lines going back to a famous winning Argentinian Doberman with over 100 Best In Show wins named Lex Luthor, after Superman’s greatest enemy.

2011-12-29T18:40:00.000+08:00

Thursday December 29, 2011

Looking back

Wheel Power by ANTHONY THANASAYAN

IT’S time to say goodbye again to another great year. This weekend, the whole world will be welcoming in a spanking new one.

As a tribute to 2011, let me recap some of the stories published in this column over the past 12 months.

The year began with me lamenting that my trips to doctors and dentists in private clinics and a government hospital were a major problem as these places were not wheelchair-accessible.

The government hospital in question, I’m sad to note, has not done much since then to be more wheelchair-friendly.

However, I’m delighted to report that I came across several private dental clinics in Petaling Jaya which made it a point to have their clinics on the ground floor rather than on the upper floors of shophouses with no lift access.

I met a new breed of doctors who were more than willing to go the extra mile for their patients. They had no qualms about making house visits to wheelchair-users to check on them and give them medication. Some even treated unemployed disabled patients and their pets for free. Syabas to these medical professionals for being a shining example to others.

Disabled-unfriendly buildings figured a lot in my columns this year. Frankly, I don’t know which was the worst nightmare: The neglected disabled-friendly toilet with faeces all over the place or a rotting door in a top shopping complex in Petaling Jaya or being trapped in my car which broke down, with a big crowd in front of me but no rescuers who came to my aid.

Then there was the government training complex with a super swimming pool but no disabled-friendly toilet in the building. I couldn’t believe my ears when I was directed to use the women’s toilet because the men’s toilet was upstairs!

Each and every organisation that I had criticised in this column called me up to say that they wanted to do something to change the situation. Personnel from a departmental store met up with me recently. They had rectified the shortcomings and come up with new and improved features for their disabled and elderly customers.

The most significant development for the disabled community was the move to set up disability committees within local councils throughout the country.

This is the first time that the vital role of local councils in improving the lives of the handicapped has been addressed by the Government.

The way I see it, local councils are the best hope for Malaysians with disabilities to catch up with the rest of society. In the past, the local councils’ neglect of the disabled’s right to basic amenites such as accessibility within and outside buildings, had stymied their ability to lead normal lives. Local councils in Selangor have until next January to set up special committees which will be launched by the state government.

Access audit surveys to check if public buildings are accessible to wheelchairs and the blind, have been successfully conducted by the Federal and local governments, as well as NGOs in the Klang Valley.

The Human Rights Commission of Malaysia (Suhakam) is the latest to join the bandwagon. Suhakam will be setting up a special committee of experts with disabilities, together with the planning and engineering departments of the Petaling Jaya City Council, to make spot checks on public buildings to see if they have disabled-friendly facilities.

Suhakam will come up with a special booklet based on their findings. The guidebook will advise the public on which places to patronise or avoid for wheelchair-friendly access in a sort of “name and shame exercise.” Suhakam will also give out disabilty access best practice awards at the end of 2012.

Happy 2012, everyone!

Awkward Moments

2011-11-03T22:20:00.000+08:00

Thursday November 3, 2011

Awkward moments

WHEEL POWER
By ANTHONY THANASAYAN

Rules are meant to be bent – sometimes.

LAST week, I received an interesting mail from a blind reader who identified herself as Vicky. She shared how awkward it was for her whenever she needed to answer nature’s call.

“I don’t have to use the toilet for the handicapped because I don’t have a problem with my limbs. But on many occasions when I headed to the loo for able-bodied people, I was stopped by an attendant or a staff member, and redirected to the toilet for the handicapped.

“I realise these people mean well. But no matter how much I try to explain to them that I am capable of using the so-called ‘normal’ toilet, they would insist that I use the toilet for the disabled because I am blind.

“This slows me down, especially when the toilet is occupied. I also do not want to take up space, in case a wheelchair-user comes along with an emergency,” explained Vicky.

On a roll: The writer trying out the Helio during a recent trip to Malacca.

She suggested that perhaps it would be more appropriate to have a label on the toilet door which reads: Reserved for wheelchair users.

On the issue of employment, Vicky opined that it would be best if the Government could step in and subsidise assistive devices such as screen readers for the visually impaired or toilets for those in wheelchairs.

“Otherwise employers may consider us ‘too expensive’ for their budget and pass the job to the non-disabled instead.

“When giant companies such as IBM, Google and even Nasa can employ blind programmers in their countries, why are the blind in Malaysia only expected to become masseurs, basket-weavers, telephone operators or trinket-sellers on street corners?” she asked.

On another note, I’ve been busy testing out the Helio, an innovative high performance wheelchair from Canada. Everything about this latest chair on wheels will make any handicapped person sit up and take notice.

The Helio has an ultralight body. This makes it easy for even a woman to carry the wheelchair into the boot of her car. The wheelchair comes with highly detachable parts, so drivers with disabilities can dismantle the key parts and place them in the back seat without help.

A unique feature of the Helio is that each wheelchair part can be ordered to suit the user’s needs. There are as many as 21 different accessories to choose from.

Despite its light weight, the Helio is no delicate beauty. It has a robust body which gives added confidence to the user. The Helio is so smooth that it glides across effortlessly with a single push, unlike conventional wheelchairs.

The only downside is that the Helio is priced between RM8,000 and RM10,000. You may need to shell out more for add-ons.

Produced by a company called Motion Composites, the Helio comes in six colour frames. It will be making its debut in Malaysia and other South-East Asian countries very soon. For details on the product, please e-mail the local distributor KG Teo at bbbteo@yahoo.com.sg

Talking Point

2011-10-22T21:12:00.000+08:00

Thursday October 20, 2011

Talking point

Wheel Power by ANTHONY THANASAYAN

The disabled could do with more aid from Budget 2012.

THE recent Budget 2012 continues to be a hot topic among many people with disabilities in the country.
Last week, Yam Tong Woo, who became blind three years ago, was eagerly watching the telly for goodies in the budget. Yam, 57, was disheartened to note that there was just a brief mention of a monthly allowance of between RM150 and RM300 which the Social Welfare Department would be dishing out.

“It must be pointed out that not all people with disabilities are eligible for this allowance,” said Yam. “I was looking forward to seeing other forms of assistance for the disabled to help them cope with the rising cost of living.”

Yam said the blind and other people with disabilities should be entitled to free rides on buses, trains and the LRT in view of their limited earning capacity. “This would be a magnanimous way for the Government to let the handicapped community know that they understand that the latter had inadvertently been left behind by the lack of user-friendly facilities.”

The disabled have to pay a hugh chunk for assistive devices such as wheelchairs and white canes, and software programmes such as Braille readers.

“If the authorities are not able to give a monthly allowance to the disabled, at least a special handout should be given to them from time to time,” said Yam.

He pointed out that assistive technology such as screen reader softwares and adaptive devices do not come cheap and are often out of reach for the blind.

“Mobility aids such as the white cane which the blind use to find their way around should be provided free to every blind individual,” Yam added.

On another note, I would like thank Daphne Ling of Vancouver, Canada, who wrote in to highlight the fact that not all disabilities are visible to the naked eye.

In When Nature Calls ... (Star2 on Sunday, Oct 16), Daphne referred to my article, Harrowing Experience (Wheel Power, Sept 8).

Daphne was concerned that the able-bodied person that I confronted in a disabled-friendly washroom, might have had an invisible disability such as Juvenile Idiopathic Arthritis or pulmonary fibrosis, to name a few.

Your point is well taken, Daphne.

However, the individual that I was referring to was clearly an able-bodied person (judging from his footprints on the toilet seat), while another one that I encountered was a staff of the hypermarket. These were all confirmed later.

However, I have to disagree with you when you suggested that “sometimes it could just be a bladder/gastro/bowel emergency, and that was the only cubicle available.”

Your comment reminded me of an incident when I had just finished using the loo in San Francisco years ago. A middle-aged man rushed in, and was badly in need of the toilet. He was literally holding his stomach and jumping on his feet.

When I suggested that he use the disabled-friendly toilet which was empty, I got a ticking off from him. “What? Use the toilet? What if a person in a wheelchair comes in right now and is in the same position?”

He held on for a few minutes before rushing into the next regular toilet that was available. I learnt a valuable lesson from this.

Lame excuses should not be used as a licence to abuse all sorts of facilities for the disabled.

Disabled And 2012 Budget

2011-10-13T21:17:00.002+08:00

Thursday October 13, 2011

The disabled could do with more help

WHEEL POWER
By ANTHONY THANASAYAN

LAST Friday’s Budget 2012 may have put a smile on many people’s faces. However, not everyone was ecstatic about it and for good reason, too. Take the case of Chong Tuck Meng who hails from Bentong, Pahang.
“I was never really interested in the national budget until I became a wheelchair user following a motorcycle accident 29 years ago,” said the 50-year-old tetraplegic who is a founder member and adviser of Perwira K9 Malaysia, a national disability organisation that supports people with spinal cord injuries.
“The first lesson that I learnt: it is extremely difficult being a disabled person in Malaysia. There are numerous social obstacles and hefty medical bills to contend with.
“I slowly discovered that national budgets can help to alleviate the struggles and hardships that Malaysians with disabilities go through every day.”
Chong wishes the latest budget had specifically addressed the issues he has to deal with after he became paralysed from the neck down.
“The accident changed my life completely. I was a very independent person. Now I need help in coping with daily activities. I need a full-time caregiver by my side to give me a glass of water whenever I am thirsty, and feed me my meals.
“I also need to be turned on my bed every four hours to prevent bedsores. I have to be carried to my wheelchair for my baths and back again. Wounds caused by sitting too long in my wheelchair also need to be dressed daily.”
The operations, cost of medication and services of a full-time care-giver have taken a heavy toll on Chong’s finances.
Though free medical checkups are available for the disabled in government hospitals, many of the medications are not available, and have to be purchased from the pharmacy.
“Getting to the hospital is another obstacle. I have to pay RM200 for a trip to Kuala Lumpur for follow-ups with my specialist,” says Chong.
“Many government dental clinics are not located on the ground floor. This makes access difficult. So I have no choice but to go to a private dental clinic and pay a bomb for their services.
“The Government should identify those who really need help and ensure they are provided with all the medicine they need,” Chong points out. “Hospitals should arrange for home visits by dedicated nurses.”
Chong says he is grateful to his mum for looking after him when he became disabled.
“My mum is 80 and can no longer take care of me. I had to raise RM6,000 to pay for an Indonesian maid as a caregiver. Unfortunately she ran away after two months and I was told to pay another RM6,000 for a replacement maid.
“It took me months to raise the money and it was gone in just two months. We are at the losing end. How are we to manage in such a situation? Why can’t our Government help us in this area? Even politicians have personal assistants, what more we?” laments Chong.
Chong pointed out that in the United States, the government provides the profoundly disabled with caregivers who are called “personal attendants”. For those who need 24-hour care, they are provided with a helper during the day, and another helper at night.
Chong feels a national budget can help in situations like his if the Government:
> Does not impose a levy on maids employed by Malaysians with disabilities.
> Subsidises the salary of maids for the disabled, or better still, pay for the maid’s full salary.
> Helps the disabled to get a replacement for maids who run away, without additional cost.
> Gives RM500 in monthly aid to all persons with disabilities.
Chong feels that even though the latest budget may have missed these pertinent issues, it is never too late to reach out to the disabled.
“When there is a political will to do something, there will always be a way!” Chong adds.

Big Shift For Disabled

2011-09-15T14:26:00.000+08:00

Thursday September 15, 2011

Council appointments a big shift for the disabled

WHEEL POWER
By ANTHONY THANASAYAN

Local councils get a nudge in the right direction.

SYABAS to Women, Family and Community Development Minister Datuk Seri Shahrizat Abdul Jalil for playing an instrumental role last week in persuading the Cabinet to make a positive move in the interest of the country’s disabled community.

The minister succeeded in getting her colleagues to push for the appointment of people with disabilities (PWDs) in special committees in every local council.

This is to ensure that basic issues such as accessibility will no longer be overlooked and neglected by city and town council planners and engineers.

The move follows a similar directive given by Selangor Chairman of the Local Government, Study and Research Committee Ronnie Liu to all 12 local councils in the state earlier in the year.

I think it is great that both these politicians have put aside their party’s differences momentarily in such an exemplary way to focus on the handicapped community which is struggling with the most basic issues.

They have pointed out that if disabled people are ever going to catch up with the rest of the nation, it must start with the local councils.

To put it in a nutshell, when the disabled are able to use the pavements or access buildings with their wheelchairs, only then will they be able to find jobs, take care of themselves and live like the rest of society.

No amount of admonition from politicians is going to make a difference for the more than 10% of the population, coupled with the growing number of elderly citizens, if local councils do not get into the act.

As chairman of Petaling Jaya City Council’s technical committee on disability, here are some tips from MBPJ for those who are unsure of how to get a committee going or what to do after that:

> Choose your PWDs wisely. Although it is imperative to have people with handicaps in the meetings, make sure the ones you pick will be able to contribute. There is no time to lose, so do not get people who will just warm the seats. The ones picked must be serious, dedicated and knowledgeable. This may require some orientation and exposure of how councils operate to give each PWD an idea of what is expected of them.

> Have meetings once a month: There is so much to catch up on and monthly meetings will help to get things going.

> Have a wide and varied representation: Don’t only think of those in wheelchairs. It’s vital to get others like the blind, the deaf, people with learning disabilities, little people and even the elderly with physical problems. Don’t forget parents of PWDs, too. They often have great ideas but don’t have the opportunity to voice them.

> Invite active NGOs: Think of support groups for people with stroke, Parkinson’s and even epilepsy, not just people with physical disabilities or those in wheelchairs. People with walking disabilities have a lot to contribute, especially in the way pavements are designed. Having said that, don’t forget individuals with disabilities as well. Because many of them may have been locked away in their homes as the local councils had forgotten about their needs, they may present the best ideas.

> Provide or pay for their transport: This is the least councils can do for their invaluable input.

> Approve new buildings only when they get the blessing of the committee. The PWDs’ views should go hand-in-hand with the local councils’ engineering and planning department.

> Organise regular site visits: Each local council should organise regular visits to the new buildings during construction to make sure that everything is in order.

> Hold social awareness programmes: International Day for the Disabled on Dec 3 and other special days such as Parkinson’s Day, World Mental Health Day, Older Persons Day and White Cane Day are all excellent opportunities for local councils to highlight and involve the public.

> Exemplary certificates as recognition: Identify buildings, restaurants and even homes for the disabled and elderly that provide proper facilities and appreciate them for their deeds. This is a very effective way to get more outfits to create a better world for PWDs.

> Slow and steady will get you there: Don’t be in a rush to get everyone on board. You can invite them over the weeks and months. Starting small will also help you to make sure that you have the right people on board who can help you reach your target.

So to all the local councils everywhere: Good luck!

Away with barriers

2011-06-30T13:43:00.002+08:00

Thursday June 30, 2011

Away with barriers

WHEEL POWER
By ANTHONY THANASAYAN

Concerted effort to look into the needs of the disabled and the elderly.
WHAT an incredible week that was. It started last Thursday with a state level seminar for the disabled in Selangor.

Organised by the Petaling Jaya City Council (MBPJ) and the Malaysian Institute of Planners, the seminar was targeted at local councils in Selangor as well as architects, planners and related parties which are responsible for creating a barrier-free society for the disabled and the elderly.

It was part of a programme by the Selangor government to set up disability committees in all the local councils in the state.

Fun for all: A dog demonstration at the Dog Carnival in Setia Eco Park, Shah Alam, last Sunday.

So far, MBPJ is the only local council in the state with a committee to look into the needs of the disabled and the elderly in the city.

The committee meets once a month. Members include a wide range of people who represent the physically disabled, the blind, the Deaf, people with learning disabilities, and caregivers and supporters of the handicapped.

Any new development in Petaling Jaya must first come to this disability technical committee before they can proceed to other bodies for approval.

This is one of the responsibilities of the special disability committee which is involved in monitoring the accessibility of buildings and making visits to check whether the standards fit their particular needs.
A lot of interesting ideas surfaced at the conference. Some of the loudest and most powerful speakers were people with disabilities.

Many said they were like virtual prisoners in their homes when the local councils failed to plan for their needs. One disabled woman said that all she wanted was a chance to lead a normal life.

On Friday, I visited one of the poorest areas in Petaling Jaya. I was taken into the only working lift of one of the four blocks housing nearly 4,000 residents. It had not been serviced for months and stopped at every floor in the 18-storey flat.

It was pitch-dark because the lights and fans were not working.

Many residents, including those with disabilities, felt trapped in such a predicament and lived in fear of emergency situations, should a fire break out.

Those in wheelchairs told me it was a nightmare getting into the only working lift as it was crowded all the time.

However, the good news is that the MBPJ promised to fix the lift as soon as possible.

We also combed the flat for possible wheelchair access, to make it more convenient for disabled residents. We spotted areas which needed cementing so that the ground was level for wheelchairs, and as the present ramp is too steep and dangerous, we decided to build a special wheelchair ramp at the front of the flat. All this is to be ready in a month’s time.

Finally, I was pleasantly surrounded by hundreds of excited, tail-wagging dogs at the Dog Carnival in Setia Eco Park in Shah Alam, Selangor, last Sunday.

I was there in my capacity as chairman of the Canine Advisory Team of MBPJ and Majlis Perbandaran Klang, to study the feasibility of creating canine-friendly parks.

What a treat it was to see several elderly people in their wheelchairs enjoying the company of their family members and pets.

Although there was some accessibility for wheelchairs in the area, the developers of the park could look into further improvements to make the area fully friendly to wheelchair users.

Whilst there are toilets for the disabled in the office and clubhouse, I hear plans are underway to construct one right where we were, which is great.

Father's Day blues

2011-06-17T10:35:00.000+08:00

Thursday June 16, 2011

Father’s Day blues

WHEEL POWER
By ANTHONY THANASAYAN

A bereaved family presses on, hopeful of seeing a cure for Parkinson’s some day.

FATHER’S Day, which falls on the third Sunday in June, will be observed this weekend. However, for one individual and her family in Kuala Lumpur, this Father’s Day will be the first time they will be spending the special occasion without their beloved dad.

Sara Lew, president of the Malaysian Parkinson’s Disease Association (MPDA), lost her dad to Parkinson’s disease (PD) early this year.

“Death is extremely hard for anyone to deal with, what more when it happens to someone who is very dear to us,” said Sara. “Though it has been several months since Dad left us, the pain of parting is still fresh in our hearts. Not a single day passes by when the whole family does not think of him.”

Sara went on to explain the struggles her dad and her family went through.

Her father was 81 when he passed away in January. He had been suffering from PD for 21 years.

Unrelenting: Parkinson’s disease is a progressive nervous system disorder that affects muscle movement and control, resulting in difficulty in doing daily activities like typing on a computer keyboard.

“The last few years had been particularly difficult,” said Sara.
“Because of the advanced stage of the disease, Dad was totally dependent on a wheelchair to move around.”

His condition was aggravated by diabetes, and glaucoma robbed him of his sight a few years ago.
People with Parkinson’s live with the nightmare of falling and injuring themselves.

“Dad was not spared this. He had a fall a few weeks before he passed away. He was also suffering from a severe chest infection at the time.”

Sara and her siblings had to look after their dad round the clock to ensure he was never alone whenever he needed something.

By that time, her dad was drifting in and out of consciousness.

Though he was unable to speak most of the time, Sara said he was still able to respond by gripping the hands of family members who touched him.

“We were praying for a miracle, but Dad passed away peacefully on the second week of January,” said Sara. “Dad was given a grand send-off on his final journey by family members, relatives and friends.

He left behind a legacy through his unrelenting battle with PD. It was Dad who encouraged me to join the MPDA nearly 20 years ago.

“As the years flew by, my involvement in the association grew. I met many people who were stricken by Parkinson’s; they also put up a good fight. Now with Dad gone, I am even more determined to carry on my work with people with Parkinson’s.”

She pointed out that the experience of learning to care for her father has helped her to better understand and empathise with the problems faced by persons affected by the disease, and their caregivers.

“Dad would never miss an opportunity to attend the annual World Parkinson’s Day (WPD) celebrations on April 11 every year,” shared Sara.

“Last year, I was moved to tears when I saw Dad entering the hall in his wheelchair; he had lost his sight by then. I had an uneasy feeling that, that might be his last public appearance for WPD.

“This year, Mum attended the WPD celebrations for the first time without Dad. Although I saw her shedding a tear now and then, she remained strong throughout the function, demonstrating her determination to continue supporting all her friends at the MPDA in the hope of seeing a cure for PD one day.”

Sara said she would never forget the day her dad attended his first MPDA meeting 16 years ago.

“Dad was always depressed over his diagnosis of PD. However, after meeting others like him, he cheered up when he realised he was not alone in his struggles.

“He stopped feeling sorry for himself and began to live life positively. He read up on Parkinson’s and took part in activities to stay on top of things.

“Dad might have lost the battle for now, but the war against PD rages on. Hopefully, some day a cure will be found for PD,” Sara added.

Go to mpda.org.my/main.php for more information on Parkinson’s disease.

Count us in

2011-06-09T11:11:00.000+08:00

Thursday June 9, 2011

Count us in

WHEEL POWER
By ANTHONY THANASAYAN

The disabled should be involved in decisions which affect their lives.
SOME good things are in store for people with disabilities in the country. For many of us who have to put up with society’s lack of concern for the basic needs of the handicapped, we can now breathe a sigh of relief.

On Tuesday, more than half a dozen persons with disabilities – me included – met at the state secretariat building in Shah Alam, Selangor. We were there to hold our first meeting as a special team on a mission to help set up disability committees in all the local councils in Selangor.

We were following up on the directive by Ronnie Liu, chairman of the state’s local government, study and research committee, to get local councils to be proactive in looking into the needs of the disabled and the elderly.

Be friendly: Pavements should be constructed with the needs of the handicapped in mind.

It was strongly felt that unless persons with disabilities were actively involved, nothing much was going to happen in towns and cities, as far as their needs were concerned.

The all-important meeting included people with a variety of handicaps. There was a representative for the blind and the Deaf. Notice how I spell the word “Deaf” with a capital “D”? This is because Deaf persons, like many other disabled people, wish to have a unique identity of their own, rather than be seen as people with a medical problem.

There were also three representatives for the physically handicapped. One was paralysed from the chest down, another from the waist down, while the third person had walking difficulties.

Input from each of them is vital as not everyone who uses wheelchairs has the same needs.

One of the most forgotten groups are people with learning difficulties. A representative from a national society on dyslexia was also present. We plan to expand the group later on, to include people with other types of disabilities.

Feedback from all these groups will help to give us an accurate picture of their needs.
Called the Disabled Technical Committee of Selangor, our quest has so far taken us to three local councils: Shah Alam, Subang Jaya and Selayang.

Selayang was the first to set up a committee; the other two are still working on it.

All the local councils received us warmly. As experts on disability through our own experiences, we want to offer all the help that we can to make our world a better place for the handicapped.
First, we set up a committee to look into the needs of the disabled. The committee meets monthly to ensure that the handicapped are not forgotten by the local councils.

Next, we provide feedback on the plans that the local councils have for us. After all, it is our lives and needs that they are talking about, and it is only right that we have a say in whatever affects us.
The committee also ensures that users of disabled-friendly facilities get to test them out first before they are launched by the local councils.

Sadly, very often we come across pathways with tactile flooring which may be friendly to the blind but totally disregard wheelchair-users and mothers with prams.

And it is not uncommon to come across toilets with a wheelchair logo on the door only to discover that the facility can only be used if you are able to get out of your wheelchair because the narrow doors are not wheelchair-friendly.

That is why the participation of the disabled is important in every local council, not just in Selangor, but throughout the country. It is not only the most sensible thing to do but it is also our right as disabled Malaysians.

As the slogan goes: “Nothing about us, without us!”

Dayspring brings out the best in the disabled

2011-06-02T13:35:00.000+08:00

Thursday June 2, 2011

Dayspring brings out the best in the disabled

WHEEL POWER
By ANTHONY THANASAYAN

ORGANISATIONS for the disabled are constantly working for a better future for their members.
A fine example of one such organisation is the Society For Persons With Learning Difficulties Dayspring in Klang, Selangor.

Located in Taman Meru, Dayspring, as it is more commonly known, was established in 1988. It came about after parents of children with developmental disabilities felt that they urgently needed a centre for their kids to go to.

They also wanted a place where they could meet other parents with special children and learn from each other’s experiences.

Today, Dayspring caters for children with a variety of learning disabilities such as Down Syndrome, autism, cerebral palsy, and those who are slow learners.

People with disabilities are often regarded as a category which is least reached out to among the handicapped community.

Unlike non-disabled children, special children require much more attention and training. This includes help in basic chores such as grooming, bathing and dressing up to socialising with other kids.

Parents with such children often don’t know enough on how to properly provide for, and to bring out the best in them.

Over the past 23 years, Dayspring has been trying its best to provide such opportunities for both special kids and their equally extraordinary parents.

From nine students when they first started, Dayspring today has an enrolment of 70, aged from seven to 30.

The centre has a management team of nine and also gets help from committed volunteers.

Any kind of improvement, no matter how little, is considered a great achievement in the lives of the students at Dayspring.

Here are just some of the success stories:

> Khai Ping, 18, has Down Syndrome. He has been attending class since he was seven. When he first started, his communication and social skills were very poor. Today, the teenager is a friendly young man with a big smile. He never fails to greet his classmates and teachers with a warm handshake. He also enjoys reading short story books, colouring pictures and can even sew basic cross stitches.
His dad was his primary caregiver who took him to and from school every day. Sadly, Khai Ping’s father passed away in an accident two years ago. Khai Ping attends Dayspring’s Vocational Training Workshop (VTW) where he packs condiments and drink straws. He is diligent and responsible in his work and duties, and rarely needs to be reminded about his tasks. And he can also make his own choices.

> Chin Zhan, 18, is a slow learner with a cleft lip. He was only four when he started with Dayspring, and was extremely shy and timid. With the help of family and teachers, his speech slowly developed. He could only utter two to three single words, but now he is able to say short sentences, make decisions and he enjoys interacting with his friends in the centre.
Chin Zhan not only holds the enviable position of supervisor of the VTW but is also chairman of the Dayspring Adventure Club.

> Hwai Yee, 25, also has Down Syndrome. He started at Dayspring when he was four after his dad had passed away a year earlier. His mother single-handedly raised him and his older brother. Hwai Yee can read and write, thanks to Dayspring. He can make his own drinks, cook instant noodles and do simple household chores.

These are just three amazing examples of how Dayspring has made a difference in the lives of people with learning disabilities.

Learning to do chores which may seem ridiculously simple to most of us is often a major challenge for special kids. Such achievements do wonders for the child’s self-esteem as well as their parents.

In Dayspring’s Adventure Club, these special kids are given the rare chance to learn and take on leadership roles, motivate one another to speak for their rights and take part in activities.

Some of these activities turned into noteworthy youth camps, singing and dancing competitions, health and recycling campaigns and many others.

Dayspring is always looking for financial help for the excellent work that it does, and is constantly seeking to provide more effective and relevant programmes for the different age groups and stages in life.

Dayspring is a non-profit organisation that is hugely dependent on public donations and funding.

If you can help by donating or volunteering, please call the director, Jimmy Low, at % 03-3342 7467.

The centre’s address is 4 Solok Limau, Taman Meru, 41050 Klang and its website is www.dayspringtc.com. Please make all cheques payable to “POBP DAYSPRING SELANGOR”. All donations are tax-exempted.

Zhar's zest for life

2011-05-26T10:15:00.000+08:00

Thursday May 26, 2011

Zhar’s zest for life

Wheel Power
By ANTHONY THANASAYAN

THE rambunctious little Doberman puppy named Dobe Ace Zhar, who joined my family of service and therapy dogs, turned four months old last week.

I’m thrilled to report that Zhar has lived up to the reputation that his breed is famous for. His uncanny intelligence, bravery and devotion has brought immense joy to me.

Contrary to popular stereotype, Dobes make excellent service dogs. Disabled people – and the elderly – who have them as partners are ever ready to vouch for these amazing canines’ abilities and unflinching loyalty.

I noticed this the moment little Zhar set his black-and-rust-coloured paws in my home.

Instead of being shy or afraid of me and my wheelchair, he accepted me at once. It took only a few minutes for him to understand the concept that the wheelchair that I sit on and I are virtually one and the same. In other words, my wheelchair goes everywhere I go.

This is something that I’ve tried to impress on some non-disabled people with great difficulty. I’ve experienced some hurtful moments when people would rather I sit in the patio instead of their living rooms for fear that the wheels of my wheelchair would leave marks on their floor.

Not to mention those horror stories that we still hear today of religious places, especially, that bar wheelchairs from their sanctuary.

If only some of these people had Zhar’s attitude, what a wonderful world this place would be!
Back to the Dobie, he has learnt to wait patiently for me to get out of my bed into my wheelchair, and wheel my way to him before I take him out in the mornings.

He just sits in his crate, wagging his tail and holding on to nature’s call until I get to him.
Even when he is let out, he will keep pace with my wheelchair until we reach our destination before he eases himself.

One would imagine that a dog like a Doberman, given his size, would be all over me by then.

However, true to the breed’s disposition, he is very gentle with me – even more than some of the dogs that I’ve worked with, including German Shepherds – making the Doberman a class above them all in this area.

Another trait that is inherent in Dobermans is their loyalty in protecting their human families at all costs when danger lurks. Zhar would cock up his ears instantly upon picking up any strange sounds, and give a warning bark. Whether it is at the front or back gate, nothing escapes his attention.

This is an important consideration for the disabled and the elderly, especially those who live alone. We feel less vulnerable to criminal activities, and this gives us the courage to interact with the rest of society.

Doberman experts say these canines are capable of handling any situation that might arise. I see this daily in Zhar.

The little pup has already learnt scores of things that are required of a service dog without my telling him what to do. These include picking up my shoes, toothbrush, clothes and even more difficult items like a bunch of keys and my urinal.

Now all that’s left to do is to get the enthusiastic novice helper to direct it all positively towards me. He observes everything and is a quick learner.

The best moments are the daily evening sessions where we share some quality time on my bed and get to bond with each other. His enthusiasm for life is inspiring. He makes me laugh every now and then which is what I enjoy most about his companionship.

The face of love

2011-05-26T09:50:00.000+08:00

Thursday May 19, 2011

The face of love

Wheel Power
By ANTHONY THANASAYAN

Hats off to all adoptive mothers of disabled children.

LAST week, I received an e-mail from a mother who only wanted to be known as WS. She wanted to share with me some of the struggles that adoptive mothers sometimes go through when they have a child with a disability.

WS wrote: “I am an adoptive mother to a special needs child who will be turning four soon. My husband and I welcomed our little bundle of joy into our arms and home without doing any blood test or other procedures as our son was so tiny when we saw him at three days old.”

“He was born prematurely and his biological mother was a teenager. That’s all we know about him.

“To think that I’m less of a mother to our son just because I didn’t carry him for nine months in my womb is a most unfair statement to make. And yet some people have no qualms about making such comments right in my face.

They say things like, ‘oh, you are not the boy’s real mother’ or ‘you shouldn’t be wasting too much time, effort and energy on bringing up such a child’.”

WS recalls the long and winding road since the baby came into the family.

“We have spent a lot of money on our son since he was diagnosed with a disability. Some so-called friends even told us to place our son in a home for the disabled but we refused.

“I was even asked to try and adopt another child, this time a ‘normal’ one so that I could find some breathing space to get on with my life,” says WS.

She adds that such remarks are largely the result of ignorance.

“I can’t understand why some people think that a child with multiple disabilities doesn’t deserve a mum or a caring and loving home.”

WS says that the days, months and years that she has spent with her child, often times in hospital, more than earned her the title of mother to her boy.

“Most people don’t realise the challenges we face every day as parents. We are there for them 24 hours a day, seven days a week.

We exercise their limbs, feed them, send them for treatment and even stay up late to catch up on the latest research, case studies and medical journals to find out what can be done to improve the quality of life of our children.

“It would help greatly if people could be less judgmental of mothers of disabled children and try to appreciate how much all of us have to struggle daily for our children.”

“In the end, what matters most is to be able to get a hug or a kiss from my son and be able to hear him say, ‘Mummy, I love you and thank you for being a mum to me!’ That would be the greatest gift of all,” adds WS.

Windows Of Opportunity

2011-05-12T09:01:00.000+08:00

Thursday May 12, 2011

Windows of opportunity

WHEEL POWER
By ANTHONY THANASAYAN

MORE than 50 people with disabilities and their caregivers and supporters attended a half-day workshop on disability rights last Saturday.

The event was put together by the Petaling Jaya City Council (MBPJ) and the Bar Council of Malaysia. The workshop was aimed at getting people with disabilities to be more aware of their constitutional rights in order to raise their quality of life.

“All of us, whether we are able or disabled, are handicapped in some way and the only way we can be empowered is through knowing what our constitutional rights are,” said MBPJ councillor Jeyaseelen Anthony, who is also a lawyer and organiser of the event.

The workshop was led by Syahredzan Johan, chairman of the Constitutional Law Committee of the Bar Council and his team.

They presented the participants who were made up of the physically disabled and the blind, with a scenario where the world would end by 2012.

In the new Earth, they were asked to come up with what they thought would be essential to help them and their specific needs.

When it was time to present their case after the discussions, each group was full of ideas on the plan of action to take to create a better world for the disabled.

At the workshop, two of the participants shared their perspective with the audience. Here is what they have to say:

< Francis Siva, 52, is president of the Independent Living and Training Centre in Rawang, Selangor. Francis, who is paralysed from the neck down, has this to say: “One of the biggest problems faced by the disabled community is the negative attitude of society towards us. Prejudice abounds. Sadly, we are still seen as ‘charity’ and ‘welfare’ cases. We are still fighting for equal treatment.

“Our wheelchairs can’t go anywhere we want. The local councils ignore our rights by building inaccessible pavements. Buses can’t take us; taxis avoid us, buildings don’t want us. It’s time for a change in mindset – and it must start with our politicians!”

< Yam Tong Woo, 57, who became blind three years ago, voices his concern: “The blind are still treated as second-class citizens in the country. Banking, for instance, is an essential part of our life but when it comes to owning an ATM card, it is virtually out of bounds to us. The blind are not allowed to hold an ATM card; this is downright discrimination. By contrast, the blind in the United States and Australia are using talking automated teller machines which allow them to manage their banking transactions through special headphones.

“Due to the lack of tactile guiding blocks, talking lifts, audible traffic lights, Braille notices and others, the blind cannot operate independently in common places like banks, post offices, and transportation hubs.

“Even the Web is out of reach to the blind. In the United States, for example, it is compulsory for all websites to be made fully accessible to the blind. In Malaysia, many of the websites belonging to government and state agencies, some banks and commercial sites are not fully accessible to the blind. It is our right to have equal access to technology and communications.

“Recently I was at the airport to board flight. I was pleased when I heard an announcement asking the elderly, persons with special needs, and families with small children, to board first.

“My happiness was short-lived when other passengers scrambled to get to their seats the moment boarding began. I was disappointed that the airline staff did nothing to stop the crowd. An old man in a wheelchair was made to queue with the rest of the passengers when boarding the aeroplane.

“The new world that I would like to create will have all these support systems and civic-mindedness in place. When executed, it will greatly empower the disabled in our society. It will open up new windows of opportunity for the disabled and enable them to find jobs and become self-reliant. We would not be considered a burden to society then.”

New Kid On The Block

2011-05-05T12:55:00.000+08:00

Thursday May 5, 2011

New kid on the block

Wheel Power
By ANTHONY THANASAYAN

Newcomer Zhar amuses the family with his antics.

I’VE become a father once again and this time, it’s to an energetic three-month-old Doberman pup named Zhar.

Not only do his first two names Dobe Ace say it all about the latest canine member to join my team of four service and therapy dogs, but the cuddly black-and-rust coloured pooch comes from a lineage of winners.

Zhar was given to me by Dr S.R. Dev, a general practitioner who has been breeding champion Dobes which have won numerous titles in international and local competitions.

Striving to serve: Zhar displays traits that will make him an indispensable companion for the elderly or disabled.

It was no surprise that Dr Dev and I hit it off when we first met at a canine event last October.
With our shared passion for dogs, we decided to work together as a team and explore the aptitude of a Doberman to see how well the breed would perform as a service, therapy and companion dog for the disabled and the elderly.

Despite the bad reputation that Dobermans have among people who are ignorant and prejudiced against the breed, they really are second to none, especially in performing their role as assistance dogs to the handicapped in overseas countries.

Dr Dev fully agrees with the popular quote by Dobe experts: “Anything any dog can do, the Doberman can also do, except that it often does it better!”

Here are some of the extracts from the diary that I’ve been keeping since Zhar came to live with me a week ago:

> Dobes and driving: My biggest worry was how to transport a feisty puppy to my home. Would he allow me to do the driving or would he end up behind the steering wheel?

The answer was to put him in a pet carrier in the back seat to limit his mobility. He didn’t like it one bit but it did the trick.

He protested several times by whining but I kept talking to him constantly in a calm voice. He settled down immediately. It was a great way to get acquainted.

Negative side: He threw up in his crate at the end of the journey although I drove slowly and carefully.

> Next: How would a soon-to-be giant-sized Dobie relate to his newfound equally large furry mates?
Soo, my 12-year-old Golden Retriever, was absolutely delighted and greeted Zhar as if the pup were his long-lost pal.

Biman, the eight-year German Shepherd was less enthusiastic initially about sharing his home with another dog. However, he has since changed his mind after realising that the young Dobe is a great source of daily entertainment with his clownish antics.

He’s a riot when he dashes off with some of the items in my room such as my toothbrush, sarung or wallet with me in hot pursuit on all four wheels!

On the positive side, picking up such diverse objects makes him an excellent candidate to retrieve important objects for the wheelchair-bound.

Reba the Sheltie who daily helps check my body for sores, had no objections whatsoever because she had found the perfect barking partner in Zhar though he sometimes plays a bit too rough with her.

Last but not least, the youngest at three years old is perhaps the most gracious of all. Zeus the German Shepherd actually helps me watch over the newcomer. He doesn’t seem to mind that he is no longer the “baby” of the family. Zeus would run over to check what is wrong at the slightest whimper or whine from Zhar.

> Winner in the making: In just seven days, I have observed some amazing characteristics in Zhar that indicate that he’s the stuff that dreams are made of when it comes to being an indispensible companion for a disabled or elderly person.

He’s delightfully playful but at the same time, he is very focused on getting what he wants. There are literally no obstacles before him: he will stand on his hind legs to get to hard-to-reach places, pick up virtually any object, and get around any barrier to get to his destination.

But no matter what he does, there is always time for generous licks from a canine who will be king one day.

Spare them a thought

2011-04-29T15:04:00.000+08:00

Thursday April 28, 2011

Spare them a thought

WHEEL POWER
By ANTHONY THANASAYAN

People living with disabilities need all the support that they can get.
WHEN Gurdial Singh woke up one morning and found blood on his blanket, he realised that something was wrong. Gurdial had been suffering from high fever for three days.

His wife rushed him to a nearby government hospital where they found that Gurdial – a diabetic – had been harbouring a nasty blister on his left toe. He was not aware of the bleeding blister because he had no sensation in that area.

More bad news was in store: Gurdial was advised to have his leg amputated.

“My only concern at that time was to stay alive,” recalled Gurdial, 82.

“The five doctors who treated me were very professional,” he added. “They made it clear why amputation was the only way out for me.”

His doctors gave him a detailed description of the process – right up until when he would be fitted with a prosthetic leg to enable him to walk again. Looking back, he said there were several key factors which helped him to make the right decision and accept his new life as an amputee.

Gurdial is very thankful for the support given by his wife.

“She has always been there for me right from day one. I truly appreciate her for it. We made the decision for the amputation together. My wife was with me throughout the ordeal as I struggled to adjust to my new life.

“I am also grateful to my in-laws for their moral support. They even helped with the arrangements to have the amputated limb (from the knee below) cremated in a temple whilst I was still in hospital.”

Gurdial pointed out that his healthcare professionals also played a big role in his recovery. “The doctors told me everything – from what would happen immediately after the surgery to how long it would take before an artificial limb would be given to me. These insights were invaluable to my rehabilitation.”

A wheelchair donation from a state assemblyman before Gurdial’s prosthesis arrived and the sponsorship of the costs of the limb by the Welfare Department proved to be a most welcome gift during his time of need. However, there were changes in Gurdial’s life after his disability.

“Although most of the people I meet talk to me just like a normal person, the invitations that I used to get for social events like weddings, housewarming parties and even New Year gatherings began to drop since I started using a prosthesis to move around,” said Gurdial. “This is probably because of superstitious beliefs about disabilities.”

Gurdial pointed out that there are people who believe that a pregnant woman should never go near a disabled person in case the unborn child becomes deformed.

“When I started to use an artificial limb, nothing about me changed at all,” he said. “I am the same human being with normal feelings like everyone else. It is important that people remember this.”

Gurdial pointed out a couple of incidents which showed up the ignorance people have towards disabilities.

He visited a Sikh temple in Kuala Lumpur once where he was not allowed into the dining room because of his prosthetic leg. A temple official pointed to a sign on the wall which said: “No Shoes Allowed!”

When he tried to explain that he really had no choice because of his mobility problems, he was told: “A rule is a rule!”

Gurdial had another unpleasant experience when he visited a Sikh temple in Petaling Jaya, Selangor.

He managed to get into the dining area but halfway through his meal, he was approached by someone who insisted that he remove his shoes or leave. Gurdial had no choice but to comply.

The person offered to take the food and serve him outside. However, not wanting to be humiliated, Gurdial turned him down.

Gurdial pointed out that temples that practise such policies should be more sensitive to the needs of people with disabilities.

Meanwhile, a check with a committee member from the temple confirmed that they do not practise any form of discrimination against the disabled.

Anyone who experiences such treatment is advised to contact the committee at once.

Game for more

2011-04-14T14:29:00.000+08:00

Thursday April 14, 2011

Game for more

WHEEL POWER
By ANTHONY THANASAYAN

WHEN Yam Tong Woo received an invitation recently to participate in an indoor golf competition, he was caught by surprise.

He was puzzled that the game was to take place right in the heart of Kuala Lumpur in Jalan Kia Peng, where there are no golf courses.

Yam, 57, who lost his sight more than three years ago, was to compete against sighted golfers. The battle was to take place in a room with a wide screen that would provide a simulated computer golf game experience.

Each competitor would be given golf clubs and a ball. Everything else takes place in a virtual golf course on the big screen.

Virtual fun: Yam Tong Woo (right) with his friends S. Manoharan and Silathul Rahim.

“Despite the circumstances, the competition proved to be just as challenging,” said Yam, who hails from Sungai Buloh in Selangor.

Yam has played in several golf events, including the Handa Singapore Classic last year. He says it was not easy getting back to a sport that he loved so much before he became blind.

“I had to re-learn almost every single thing in the sport,” he explained. “After becoming blind following a mysterious infection, I had to adapt and learn to move around with a white cane. More importantly, I had to get used to living in a new, dark world. I made new friends and learned to get on with life.”

Yam was not the only blind person who took part in the indoor golf competition that afternoon. Two of his blind friends, tagged along to the Golf Club KL City Centre. They were keen to discover blind golf, too.

They had a great time, and to top it off, each of them was given a one-year honorary membership to use the golfing facilities.

Just like in a regular golf practising range in the open, Yam was guided into position with his 7-iron golf club. Then a golf ball was placed in a perfect position for him to strike.

Although there wasn’t a real field in front of him, his physical strike was recorded by cameras controlled by a computer.

The force, angle and aim of his hits were projected on the screen and read out to him during the game.
“The details of my performance allowed me to analyse my shots and make the necessary adjustments in order to deliver neat shots each time,” said Yam.

“As a blind golfer, I have to get used to a lot of sounds such as the ball hitting the big screen in front of me to grasp the game better. I had to take note of the fact that the game was played in an enclosed cubicle and in a U-shaped area, so the sound of the club striking the ball was actually louder than it would be in an open field,” he added.

“Naturally, these new challenges made me nervous at first but I got over it after the first few tries.”
In the computerised field, a popular US golf course was selected via the console controller. According to Yam, this made the game more interesting.

Yam could feel the adrenaline rush as the scores were automatically computed for the duration of the game.

“I couldn’t help feeling just as nervous about the game as I did standing on the tee-box in a normal golf course even though I am not able to see what is happening in both situations,” Yam pointed out.

“Although everything happened on the big screen, it was amazing how real it felt hearing the sounds of the ball entering a few pin holes, as well as the bad shots as the ball landed in water with a splash.
“Indoor blind golf will certainly open new doors of opportunities for people with disabilities,” Yam added. \

Attention to detail

2011-04-08T18:10:00.000+08:00

Thursday April 7, 2011

Attention to detail

WHEEL POWER
By ANTHONY THANASAYAN

ONE of the important aspects of living with a disability is to have regular medical check-ups. Recently Wheel Power spoke to consultant neurologist Dr Lim Shen-Yang on the subject at Universiti Malaya Medical Centre in Kuala Lumpur.

Dr Lim, a Parkinson’s disease and movement disorders specialist, came up with some pertinent points for people suffering from chronic disabilities to pay attention to when seeking the help of doctors in hospitals.

His suggestions are also relevant for anyone who at some point in their lives will need medical care.

“There are ways to increase the efficiency of a consultation with your doctor, so that he/she can spend the limited time available coming up with good solutions to your problems,” said Dr Lim. “Not a day goes by when I do not see patients who have no idea of what medicines they are taking. They frequently describe their medication as ‘it’s that small yellow tablet, doctor!’

Patients should provide accurate information to avoid misdiagnosis.

“Patients do not take the trouble to bring the medication in for verification or provide the doctor with a written list of their medicines.”

Dr Lim said precious time was wasted in trying to figure out what constitutes basic information needed for proper medical consultation.

Having a neatly written or typed list of medicines that is accurate and up-to-date can go a long way in conveying that you are interested in your health.

This, according to Dr Lim, will help to minimise the chance of being prescribed a medicine that interacts negatively with a prescription that a patient is taking.

The written list should include information on the generic and/or brand name, dose and frequency of intake of the medicines, as well as a list of medicines that previously caused a patient to have a bad reaction.

For patients with multiple medical problems, it helps to have an up-to-date point-list of the diseases or conditions that he/she suffers from.

“If you have a medical chart that is six inches thick, it probably is not reasonable to expect a doctor seeing you for the first time to go through this,” said Dr Lim.

In such situations, he suggests the following:

> Bring along whatever scans or test results you have, for your doctor’s visits. Whenever possible, ask to keep a copy of important medical records.

> If there are a number of symptoms or problems to tell your doctor, write these down. If it is a long list, try to prioritise them in order of “most troublesome” to those that are less so.

> You should come away from a consultation with at least a basic understanding of the doctor’s assessment of your clinical situation and his/her rationale for recommending particular treatments.

If no explanation is forthcoming, ask for one. If things are not clear, do not be shy to ask for clarification.

Often, it helps to have a family member or friend present during the consultation to listen in and jot down the important points or ask relevant questions. Providing a collateral history is useful to doctors.

(For example, an accurate diagnosis of epilepsy relies heavily on a description of the events surrounding the seizures, which cannot be provided by the patient himself, as he was unconscious at that time.)

> If your problem is an unusual one, consider seeking a second (or even a third) opinion. There have been cases where a wrong diagnosis was made, or incorrect treatment given.

A good doctor will not be offended if his/her patient asks to consult another doctor for another opinion – as long as the colleague is one with the appropriate expertise.

This, however, needs to be balanced against the other extreme of “doctor-shopping”; these are patients who flit from one doctor to the next, and continuity of care inevitably suffers.

In this context, it is worth noting that there is great variability in individual responses to treatments. Thus failure of a trial of one or two medicines should not immediately indicate that the doctor is incompetent.

If you trust your doctor, and provided that time is on your side, it is often best to adopt a disciplined approach and persist with the treatment recommendations, rather than bail out prematurely.

To sum up the above in one sentence: “Be interested in, and take responsibility for, your own healthcare”.

Changes is in the air for people with disabilities

2011-03-31T22:24:00.000+08:00

Thursday March 31, 2011

Change is in the air for people with disabilities

Wheel Power
By ANTHONY THANASAYAN

SOMETHING wonderful has transpired for people with disabilities in Selangor. The move to raise the quality of life of Malaysians with disabilities was discussed at a press conference held at the Selangor state secretariat building last Friday.

When it was over, all of us in wheelchairs and those with other types of disabilities couldn’t stop beaming from ear to ear just thinking how our lives will be changed for the better.

It started at a press conference called by Ronnie Liu, chairman of the state’s local government, study and research committee.

More than half a dozen non-governmental organisations for people with disabilities turned up. They were well represented. The deaf community was there along with the blind. A representative of persons with learning disabilities was also present.

Even wheelchair users were well-represented. There was someone who was paralysed from the neck down, those handicapped from the waist down, someone with walking difficulties, and even a woman with brittle bones.

Many do not realise that wheelchair users do not necessarily have the same needs. Depending on their level of paralysis, their special needs often differ from one another.

We were all there to form a special committee at the state level.

Headed by Liu as the adviser, the committee meetings will be chaired by a disabled person. Our mission is to spend the next three months visiting all the 11 local councils in Selangor to help them set up a disability committee.

The Petaling Jaya City Council is an exception because it already has an active disability committee.
The purpose of setting up such committees is to ensure that local councils will actively pursue programmes for the handicapped and elderly citizens.

The committee will monitor the progress of each local council in creating a barrier-free environment that benefits everyone.

It was highlighted that positive changes like this can only come about when the local councils actively engage people with disabilities in their building plans.

Liu underscored the importance of local councils in working with NGOs for the disabled. In addition to the setting up of the committee, the following issues were also raised at the press conference:

> The special committee under Liu will provide the names of the NGOs for each of the local councils.

> The committee will be involved in educational programmes. Liu set aside RM10,000 for the committee. A special forum is being planned for all local councils throughout the country in June. It is aimed at encouraging local councils to set up disability committees of their own.

> A special booklet on how to set up disabled committees in local councils will be compiled by the special committee.

> Plans are also under way to look into a welfare allowance for disabled persons in the state. It was suggested that the Selangor government consider a monthly allowance of at least RM500 for each disabled person. Currently, not all disabled Malaysians are entitled to financial aid.

> A study will be carried out to look into changing local by-laws to penalise people who abuse facilities for the handicapped. These include non-disabled persons who park in lots allocated for the disabled, as well as building managements that turn disabled toilets into store rooms.

> The Selangor government will look into ensuring that all multi-storey buildings are equipped with lifts for the benefit of the wheelchair-bound and the elderly. One way is to come up with incentives for developers who provide such facilities.

Up the garden path

2011-03-25T21:06:00.000+08:00

Up the garden path

Thursday March 24, 2011

Up the garden path

At last, a forest reserve with disabled-friendly facilities.

TRAVELLING in cyberspace and making new friends on Facebook and Twitter is wonderfully convenient for people who use wheelchairs and walking sticks.

But I must admit that when it comes to getting out and actually being on the ground, there is simply no comparison to the real fun and excitement that Mother Nature can bring into your life. About 150 persons – including people in wheelchairs and the elderly – pleasantly discovered so last Saturday when we turned up at Kota Damansara in Petaling Jaya, Selangor.

Community gem: The LA21 Herbal Garden initiated by Friends of Kota Damansara, Selangor, is purposefully inclusive of the disabled, the elderly, women and children.

We were there to witness the official launching of Kota Damansara’s LA21 Herbal Garden by the mayor of Petaling Jaya. The herbal garden isn’t the only unique feature that one can find at the Kota Damansara Community Forest Reserve (KDCFR).

Visitors to the area will also be able to find people-friendly facilities, such as wheelchair ramps that
are also suited for mothers with prams and the elderly.

“We had to think carefully before we came out with strategic spots in the half acre area in which we decided to place the disabled-friendly facilities,” said local conservationist Jeffrey Phang.

Phang, who has been actively involved in the forest for nearly a decade, pointed out that the facilities included a wheelchair pathway, handicapped-friendly toilet that was also geared towards elderly persons, and an outdoor barbeque stand that was at the height level of wheelchairs.

Phang, an assistant professor at University Tunku Abdul Rahman in Cheras, Kuala Lumpur, added that ideas are in the pipeline to bring disabled communities inside the forest instead of just remaining at its fringes.

“The idea to integrate all communities of people instead of only selected groups was brought up at the historic Earth Summit held in Rio de Janeiro, Brazil, in 1992.

“It was there that the local agenda concept of getting governments, businesses and communities to work together from a more holistic approach rather than a parochial perspective in developing liveable cities and towns, was born,” said Phang.

“In other words, LA21 challenged us to be more inclusive of all persons in creating structures that provide solutions for everyone, instead of just some people.

“We have to build our cities to be more conscious of safety, more caring about the environment and more inclusive of the disabled, elderly, women and children,” said Phang, who was a key organiser of the launch together with the Petaling Jaya City Council and the Selangor Forestry Department.

Besides the disabled, other parti-cipants included the elderly, boys and girls, and business groups.
Among the two new groups of stakeholders present were residents from low-cost flats and representatives from nearby primary and secondary schools.

After the speeches, the dozen or more disabled and elderly participants couldn’t wait to test the facilities.

We were delighted that a special ramp was designed to take wheelchairs and prams right down to the herbal garden area.

The wheelchair users pointed out areas where the ramp was rather steep and needed to be levelled further. All these points were noted as their participation was also meant to provide user-friendly feedback.

Many of the handicapped visitors were thrilled that the people behind the reserve had taken the
trouble to install disabled-friendly facilities, compared to other parks that hardly have any wheelchair accessibility.

“Because we at the KDCFR are a community forest, we felt that we should set an example to other parks and forests in the country, so that every stakeholder and their needs will be considered,” said Phang who is also chairman of the Friends of Kota Damansara group.

“Our next plan is to get wheelchair-users as close as possible to the lake where they will be able to dip their feet in the water, if they wish.”

Phang pointed out that a perfect location had been identified for the disabled to do this.
“Some environmentalists may frown at the idea of having some alterations in the forest and feel that nothing at all should be disturbed,” said Phang.

“However, to view things this way is rather inward-looking. Whilst the deeper areas of the forest can be left untouched, we should seriously consider making some parts of the forest accessible to those who otherwise may never be able to appreciate its benefits.

“The goal is to include people with their differences and diversities. In this way, environmentalists will be able to garner more support for their clarion call to save our forests,” Phang added.

Gentle Giants

2011-03-17T14:11:00.000+08:00

Thursday March 17, 2011

Gentle giants

WHEEL POWER
By ANTHONY THANASAYAN

We need to change misconceptions about German Shepherds.
THE famous quote about dogs being man’s best – and true – friend was never more meaningful than in a school field in Petaling Jaya last Sunday. My disabled chums and I found ourselves delightfully in the company of more than 50 canines.

We were at the first specialty show organised by the newly registered German Shepherd Dog Club of Malaysia (GSDCM) where another popular dog-related saying proved true: “You have never lived life until you have owned a German Shepherd Dog (GSD)”.

Best Male in Show: The German Shepherd Dog Aiko Vom Leithawald with his handler Dr S.R. Dev (left).

One could clearly see this among the more than 200 GSD owners and aspiring pet lovers of the magnificent breed who gathered at the event.

I was invited by the Club as their guest of honour, representing the Petaling Jaya City Council (MBPJ) as councillor and chairman of the Canine Advisory Team – as well as president of Petpositive, a national animal-assisted therapy society for the disabled and the elderly.

I was one of the first persons to turn up at the field just before the crack of dawn, and it wasn’t long before the other early birds arrived. They included powerful wolf-like canines that leapt out of their cars and vans the moment the doors were opened.

They immediately began sniffing the ground to figure out where they were and what was expected of them before they were comfortably placed in their crates before showtime.
Some of their owners didn’t look as confident. Several of them paced about nervously, unsure of how their pets would perform.

It was amazing how the German Shepherds reacted to our wheelchairs and our unique differences. Despite their so-called “menacing demeanour”, they were as gentle as lambs when we approached them.

Although they didn’t know what to make of our wheelchairs and canes, they instantly adapted to us – another positive trait of German Shepherds that is a match to none.

Some of the younger dogs and pups frolicked around our wheelchairs rather awkwardly, mistaking us for strange playmates.

One GSD gently tapped a blind man’s hand with its nose to let him know that it was sitting close to him. It showed no aggression at all when the man grabbed its tail by mistake.

Another GSD gave a woman in a wheelchair a friendly lick on her hand, which delighted her.
The coveted “Best Male In Show” was won by four-year-old Aiko Vom Leithawald. Even though exhausted, the German Shepherd happily obliged people with disabilities whenever they approached him to have a photograph taken or to give him a pat or hug.

Given this caring behaviour, it is shocking that some people still view GSDs as “ferocious” animals.
Even the Department of Veterinary Services lists the GSD as a “dangerous” or “restricted” breed.

This clearly needs a serious rethink.

GSDs are one of the most versatile canine breeds and serve as excellent therapy and companion dogs, as well as indispensible partners in crime prevention and protection work.

Most of the disabled told me that this was the first time that they had been to a professional dog show. No other show organiser had cared to invite them or make the venues accessible to wheelchairs.
At this show, there was a smooth path for wheelchairs and the disabled were given parking slots next to a shaded area from where they could enjoy the event.

As it turned out, it wasn’t only the disabled who benefited from the event.

Our booth was visited by scores of people who wanted to know more about animal-assisted therapy, disability and issues of ageing.

Though we made many human friends that morning, I must admit, it’s the profound encounters with those uncanny canine chums that will most likely last forever in our hearts.

Give due respect to the disabled

2011-03-04T15:48:00.000+08:00

Thursday March 3, 2011

Give due respect

WHEEL POWER
By ANTHONY THANASAYAN

The rights of the disabled should never be compromised.

MORE than a dozen persons with disabilities met up with Selangor state executive councillor Dr Xavier Jayakumar on Monday.

They were there to hand over a memorandum calling for the promotion of a caring government and an end to all forms of discrimination against people with disabilities.

The move came about after attempts by the authorities to forcibly move five hawkers from the Taman Megah market in Petaling Jaya to another place. The stall-holders included the elderly and a wheelchair-bound woman.

The memo handover was undertaken by several organisations for the disabled with the support of NGOs.

The groups condemned the attempt to move the five hawkers as blatant discrimination against vulnerable groups, calling it a total mockery of the United Nation’s Convention on the Rights of Persons with Disabilities which guarantees equal opportunities in employment for the handicapped in Malaysia.

They expressed shock and outrage that such an incident had happened when the official protocol document had been signed by Malaysia and ratified last July.

Cha Seak Nee, a trader from the Taman Megah market in Petaling Jaya, handing over a memorandum to state exco member Dr Xavier Jayakumar at the state secretariat building in Shah Alam.

The memorandum pointed out that the convention demanded not only accessibility for people with disabilities but also called for a paradigm shift in terms of attitude and approach towards them.

It radically shifted how people with disabilities are viewed – from objects of charity to being individuals with fundamental rights who are capable of making decisions for themselves, and who are active members of society.

The groups demanded an immediate end to the harassment of the stall-holders and that they be allowed to stay put in their spot unconditionally. They also called for a full investigation into those responsible for trying to get the disadvantaged hawkers out.

The disabled also took the opportunity to express what they wanted as citizens with disabilities.
These include:

> Please keep politics out: Slots designed for the handicapped and policies made for their benefit should be respected and protected so that no one can change them to suit their whims and fancies, or for their political gain.

> Special slots allotted to people with disabilities should always be located in the front where they are visible to everyone. They should also be given help to make a success of their businesses, especially when everyone knows that people with disabilities are at a disadvantage compared to others.

People with disabilities should not be hidden from society. They should not be required to use a different entrance at the back or the side of a building. Instead, they should have the use of the main entrance of a building that is accessed by the public.

Such affirmative action will safeguard the disabled person’s dignity and demonstrate sincerity in undertakings for the handicapped.

> Any decision affecting the disabled should actively involve the disabled themselves as they know best what is good, bad or unworkable for them. No politician, councillor or local council body has the right to make decisions for the disabled without consulting them, unless they are handicapped themselves.

> Educate the top brass: All ADUNs, politicians and even councillors should take it upon themselves to be educated on the rights and needs of the disabled and other marginalised communities.

The best way is to visit the handicapped in their homes or seek advice from the many NGOs in existence. Or better still, live in a home for the handicapped for at least a week – or try using a wheelchair or being blindfolded for seven days – to get an idea of what it is like to be in the shoes of the disabled.

This would greatly help them to stay focused on removing many of the unnecessary barriers in the paths of people with disabilities, and not add to them.

> The rights of minorities are just as important as the majority, and in some cases, the minorities deserve more attention.

> And never forget that disabled persons are voters, too. Their rights and needs should never be compromised for the benefit of the non-disabled. This is, without doubt, the hallmark of a caring government.

Life Goes On

2011-02-25T14:47:00.000+08:00

Thursday February 24, 2011

Life goes on

Wheel Power
By ANTHONY THANASAYAN

Octogenarian an inspiration to her friends.
ONE of the best things about writing this column is that I get to meet the people whom I conduct interviews with. This week’s personality is no exception.

I met Madam Khoo Siew Jiong who was introduced to me by my blind chum, Yam Tong Woo. Yam was a college mate of Madam’s Khoo’s son, Peter Yeoh.

This remarkable 85-year old is truly inspiring.

Madam Khoo, who joined Telecoms as a telephone operator in Penang in 1947, retired after 33 years of service with the company.

She lives with her husband who is two years older than her. She looks forward to tackling some of the daily house chores, though the elderly couple have a helper who comes in once a week. Their son, Peter, who resides in Britain, visits them whenever he can.

Madam Khoo looks forward to her daily tai chi exercises which she performs with a group at a field about half an hour’s walk from her home.

In 2006, Madam Khoo’s husband was diagnosed with Alzheimer’s, a disease that involves the progressive loss of brain nerve cells.

Those who have the condition gradually lose their ability to perform basic chores, such as brushing teeth, dressing up and bathing. They may even lose their ability to walk and talk.

Madam Khoo is thankful that her husband’s condition so far is mild compared to others.

“The man I started courting in the 1950s and got married to five years later has changed quite a bit since he contracted Alzheimer’s disease,” said Madam Khoo.

“Though he can recall what happened many years ago, he is unable to remember things that have just happened – he forgets them almost immediately,” she explained.

Madam Khoo pointed out that though her husband can recall some of the things that happened during the Japanese Occupation, he can’t remember what he ate or drank only five minutes earlier as well as the dates and days of the week.

“These were the first clues that led to the doctor’s diagnosis of his condition,” recalled Madam Khoo, adding that she has learnt to accept his condition despite the frustration of having to adjust to the situation.

“I am thankful that my husband is still able to walk and move about independently, although he spends most of his time resting in bed. We still communicate with each other even though I have to use sign language sometimes because my hubby is hard of hearing due to his advanced age.”

About two months ago, Madam Khoo fractured her left hand when she tripped and fell on the pavement along Green Lane – one of the busiest roads in Penang – whilst going for her daily exercises.

The pavement was not suitable for anyone to walk on, let alone people in wheelchairs, the elderly or even children. Madam Khoo stayed in hospital for four days, with her fractured hand in a plaster cast.

Madam Khoo made arrangements for a maid to look after her husband during her hospital stay before her son flew back to look after his parents.

The wires that were inserted into her elbow in the operation were removed last week, along with the cast.
Now that Madam Khoo suffers from a frozen shoulder, she has to work on it every day to loosen the stiffness.

She hopes to see the local council show more interest in the welfare of the disabled and elderly, by making the environment more user-friendly.

Chummy get-together

2011-02-10T16:36:00.000+08:00

The Yams with Joyful

Thursday February 10, 2011

Chummy get-together

WHEEL POWER
By ANTHONY THANASAYAN

The festive season is a time to review camaraderie with loved ones.
LAST week’s lunar celebrations marked the Year of the Rabbit for most people. However, for one blind gentleman nearing his sixties, the season was all about spending time with man’s best friends – and not to mention, some great human chums as well.

So who do you think got Yam Tong Woo’s very first Gong Xi Fa Cai greetings at the stroke of midnight last Thursday? His three loyal canines named Prosperous, Lady and Joyful, of course!

Prosperous is a 14-year-old black mixed Labrador, Lady is a black purebred Labrador, while Joyful is a mixed small breed brown dog who is the leader of the trio. The latter are both six years old.

When one meets Yam and his furry friends, it isn’t difficult to understand why there is such a strong bond between them.

“My girls adapted amazingly to my disability when I became blind three years ago, so much so that they are very protective of me when I am at home with them,” said Yam.

“My pets helped to cushion the blow of suddenly becoming blind and bought me some time to accept my condition and live life as a blind person,” said Yam.

The ushering in of the Rabbit year, however, saw the reversal of roles of canine and master. The deafening firecrackers in the neighbourhood brought Prosperous, Lady and Joyful scampering into the home of the Yams.

Like other canines, they were terrified of the loud sounds which served as a great excuse to snuggle up with Yam in his bedroom as he patted and reassured them that everything would be all right by morning.
Furry pals aside, it has always been a family tradition for the Yams to travel to Penang, where his in-laws reside.

“Until I became blind, I was always the driver for such trips,” said Yam. “Now my wife has taken over the wheels.

“I was amazed to note how much has changed over the years as my wife, Hong, described the scenery along the way.”

The six-hour drive from their home in Sungei Buloh in Selangor to Penang was gruelling. However, it brought back pleasant memories for the Yams.

As they passed by Ipoh, their memory flashed back to a visit they made there only a week ago, when they met up with some old friends from Britain and Australia whom they haven’t seen in 20 years.

Their pre-lunar reunion led to a visit to one of the many beautiful limestone caves in the city.

“I was particularly encouraged to note during my sighted days that the authorities had thought of building wheelchair access for persons with disabilities back then, even though I had no inkling that I would become blind one day,” Yam recalled.

“They had ramps for wheelchairs as well as handicapped-friendly toilets. However, access was restricted to the cave’s main hall.

“I hope the authorities will realise that anyone can become handicapped at any time,” cautioned Yam. “Thus it would be wise to start putting in all these facilities, including guiding blocks for the blind so that they too can enjoy our many beautiful garden landscapes like the non-disabled,” he added.

The Yams were treated to hearty meals by their relatives throughout their stay in Penang. They also took every opportunity to visit the hawker stalls. One of them posed a big problem for Yam. He had to cross a busy road to get to it.

The experience was terrifying as few drivers stopped for him even though he stretched out his white cane for all to see.

When that didn’t work, he had to depend on his son who was with him. They had to dodge oncoming traffic to get across. But that was not the end of their problem.

The maze of tables and chairs set up by the hawkers made it a challenge for anyone bearing a white cane, to get through.

Yam was sure he had accidentally knocked down one or two glasses of drinks in the process. But who cares? The Penang char kway teow in that part of town was worth all the trouble, added Yam.

God's Special Gift

2011-02-03T17:58:00.000+08:00

Thursday February 3, 2011

God’s special gift

WHEEL POWER
By ANTHONY THANASAYAN

A child with disability helped set priorities for one parent.

IT’S unfortunate that there are people who still regard having a disabled person in the family as a curse from God.

Not Janetta Loke, however.

Loke, from Petaling Jaya, Selangor, considers disability a direct blessing from God.

“Baby Lim has been nothing but a positive force ever since he came into our lives three and a half years ago,” she told Wheel Power with a big smile last week.

“In fact, he came into my life at exactly the right time when I desperately needed to learn about some finer points in life.”

Loke, 43, says that she was a workaholic and thought only about earning money when God gave her Baby Lim.

“He taught me some very important lessons on motherhood as well as where to put my priorities in life,” Loke points out.

Although it is never easy to look after a toddler who requires 24-hour care, Loke has learnt over the years to take it in her stride.

Baby Lim has multiple disabilities. He has two cysts in his brain and spine that for the time being cannot be removed because it can be life-threatening for the child.

Doctors have diagnosed his condition as myopathy. Baby Lim also has a hole in the heart as well as epilepsy.
Loke, who currently works part time in Kuala Lumpur, says she has hardly any time to do anything else when she returns home.

But all the attention she gives Baby Lim is paying off.

Her child was unable to sit up until two months ago and now he is learning to stand.

“I am delighted that he is able to recognise the route to his special school and the government hospitals that I take him to each week for his therapy,” beams Loke.

“When Baby Lim doesn’t like something, like going to school, he would scream loudly and throw tantrums when we arrive at our destination.”

“He is particularly popular at the hospitals, though. He picks out the doctors he likes and will stretch out his arms to them and asked to be carried.” He will throw tantrums with those he doesn’t like.

Loke, however, is pleased with his display of feelings. It shows the boy’s progress in being able to express himself.

“What is most rewarding for us is his ability to understand what dad and mum say. He is increasingly able to express his thoughts and emotions – something that the doctors initially suggested might not be possible.

“For instance, he will start yelling unhappily when I start telling dad the naughty things that he had done on a particular day.

“He has certain sounds and expressions for each emotion – something that only we as parents and his caregivers understand.”

Loke says that having Baby Lim has taught her much about disability.

She hopes that others too would realise the special circumstances of mothers with disabled children.

“For instance, during festive seasons like this coming Chinese New Year, some people wonder why I’m not as enthusiastic about buying new things or decorating for the event.

“That’s chiefly because parents with disabled children don’t have the leisure to do much of that. We have little choice but to work to get the extra money needed to look after our disabled kids.

“Sometimes even when I use the disabled car park, people think I’m misusing it because Baby Lim’s disabilities are not as obvious physically.”

Loke now puts his disabled identification card on the car dashboard to avoid any confusion.

Another problem that Loke often faces is inaccessible buildings and restrooms – many of them even in hospitals. She says most restrooms are not designed for changing diapers comfortably and those that are available are not designed for handicapped children.

Baby Lim and his parents would like to wish all readers of Wheel Power a Happy New Year full of prosperity, good health and a better understanding about people with disabilities and what their families and caregivers go through.

Blind to the plight of the disabled

2011-01-27T16:47:00.000+08:00

Thursday January 27, 2011

Blind to the plight of the disabled

WHEEL POWER
BY ANTHONY THANASAYAN

There should be more empathy for the disabled.

IT IS wonderful to see more events involving persons with disabilities. But do non-disabled persons know exactly what to look out for when they invite the handicapped to their functions?

Recently I spoke to two of my disabled chums who frequently attend public events. They were full of ideas on what the able-bodied ought to do when they decide to play host to people with disabilities.

“One of the best things I like about attending functions is being approached by the ushers the minute they see me,” said Yam Tong Woo who became blind three years ago.

“It’s a great and reassuring experience for any blind person to know he has come to the right place,” added the 57-year-old former engineer.

“Although we may not be able to see, we can always tell when someone is wearing a friendly smile on his or her face,” Yam went on.

Another important consideration is to be given detailed directions on where one goes from there and what they have to do. “Directing a blind person to the correct floor of the event, and letting them know where the food table and restrooms are, are vital to us,” said Yam.

Not doing this for the blind can prove to be a disaster, he pointed out. Yam related a recent incident in which he was invited to a large indoor gathering.

Although the disabled were invited, together with the able-bodied, some of the organisers obviously forgot about our special needs, he said. And although Yam could not see a thing, he could tell that he was in a very large crowd.

“I was the only blind person in a sea of people,” he said. “Nobody noticed or was bothered about me or my white cane as I struggled to find my way through the crowd to where we were supposed to have our lunch. Although they were the ones with the gift of sight, they kept bumping into me.”

“A white cane is an international sign to tell everyone that the person holding it is visually impaired,” Yam pointed out,

At another event, Yam had trouble finding a seat for himself. What was ironical was that the organisers had taken the trouble to invite the blind and while there were many chairs around, each was either reserved for the able-bodied or had fully sighted people sitting in them.

“Even though all of them could see me with my white cane, no one offered me a seat,” he said. “Some even went to the extent of leaving their bags on the seat when they had to leave for a while, and asked their friend to reserve that seat for them.”

The only empty chair was right at the back, next to the loudspeakers which nearly made him deaf by the time the event was over.

For Chong Tuck Meng who was paralysed from the neck down nearly 30 years ago, the issue is very simple: if anyone invites people in wheelchairs like him, they must be prepared to meet the needs of the physically handicapped.

Chong, 49, who hails from Bentong in Pahang, stressed that people in wheelchairs should have access to move about freely in a hall.

He recalled being placed in a secluded corner, blocked by a sea of able-bodied people. He added that the organisers never asked him where he would like to sit.

“It was very frustrating for me because I had to sit there for more than five hours and was not able to go to the toilet,” said Chong. “What made it worse was that my able-bodied caregiver was separated from me instead of being allowed to sit next to me.

“My whole afternoon was ruined because I couldn’t get to him for assistance,” he said.

Both my disabled chums agree that whilst there have been improvements recently, there needs to be more awareness among the able-bodied to help them empathise with the disabled in the country.

Make hospitals disabled-friendly

2011-01-20T18:37:00.000+08:00

Thursday January 20, 2011

Make hospitals disabled-friendly

WHEEL POWER
By ANTHONY THANASAYAN

Hospitals and clinics should be accessible to the disabled.
ALL of us know what to do when we fall ill – go and see the doctor, of course.
However, if you happen to be in a wheelchair like me, doing exactly that may not be as easy as one might imagine.

Hardly a fortnight into a brand new year, I found myself being confronted by the first major challenge of 2011. The lower part of my left jaw had swelled up. The gums, teeth and throat in the same area were painful, too. When the pain started to spread to my left ear and slowly towards my eye, I got worried. I realised I had to seek medical attention at once.

Hospitals and clinics need to be more disabled-friendly.

My first instinct was to go and see a general practitioner at a nearby clinic. However, even before one is able to do that, a wheelchair-user will need some kind of assistance to get into a car to go to the clinic for treatment.

I was lucky. My pal Andrew Martin rushed to my assistance.

But my problems were far from over. At the clinic, all the parking lots outside were taken by nondisabled drivers patronising the shops and cafes in the area.

It is sad to note that a clinic that is supposed to serve sick people, including the elderly and the disabled, had not thought of reserving a parking lot for such patients.

This can be easily arranged for between the Petaling Jaya local council (MBPJ) and the clinics. Clinics can readily obtain the exact specifications for a disabled-friendly parking lot from MBPJ’s planning and engineering departments.

Access into the building was a nightmare as there were no wheelchair ramps. The doctor, however, was an angel. Realising that his outfit did not cater to wheelchairs, he came into our car to examine me.

This may have worked for the both of us there and then, but all medical clinics really ought to look into providing wheelchair access for their patients.

Failure to do so would deny disabled and elderly patients access to medical treatment.

My problem didn’t clear up after seeing the GP. Apparently it turned out to be a job for the dentist.

Looking for a dentist who was situated on the ground floor was like looking for a needle in a haystack. Nearly all the dentists that I called up had their practices on the first floor. The only one I discovered on the ground floor had a steep and dangerous ramp leading into the clinic.

There was another clinic with disabledfriendly facilities in Kuala Lumpur. However, the fees were beyond my budget.

It seems very wrong to me that one has to pay through his nose for some basic wheelchair-friendly facilities that stand to benefit all types of people. How would these doctors and dentists meet the needs of an ever-growing population of elderly and disabled persons in our society?

I finally found a ground floor dental clinic in Klang, Selangor, about 30km from my home.

Unlike most dental clinics, the treatment room was spacious,with easy manoeuvrability for wheelchairs.
My problem was over as soon as the offending tooth was extracted. But I couldn’t believe I had to travel all the way when the dentistry department of University Malaya Medical Centre is just five minutes away from my house.

Trying to get there in a wheelchair is a “hell-on-earth” experience.

There are no clear signs inside the main hospital to lead a patient to the department. One has to be a paralympian to push one’s wheelchair – without assistance – for what seems like forever to access the new building from the old one.

There are some places where the pathways are deserted.

Imagine suddenly facing a crisis there with no one to help you.

There are also heavy doors that a wheelchair-user has to wrestle with, in order to get in and out.
The pathway also brings the patient out onto the road before they can enter into the clinic.

Those who try to access the direct way are forced to look for a security guard located on another level to get him to come and open a gate to the department. The only lift to the department is just as elusive as the guard. It is concealed in the basement.

I brought these problems up to the public relations department a number of times over the years but I’m told the same story: the matter will be resolved once a new renovation takes place.

Well, try telling that to a pusfilled, decaying tooth that urgently needs to be extracted !

2011-01-14T03:34:00.000+08:00

Dr Chandra and MBPJ moderator Richard Yeoh

Thursday January 13, 2011

Aim for dignity and honour

Wheel Power
By Anthony Thanasayan

Uphold the rights of the disabled.

ABOUT 300 people attended a special seminar on disability in Petaling Jaya recently. It was put together by the Petaling Jaya City Council.

The event, in celebration of International Day of Persons with Disabilities last month, was targeted primarily at non-disabled people who are key stakeholders in the city.

These included resident association heads, leaders of the various religious institutions, architects, local councillors and departmental directors of the various local councils.

One of the main speakers at the seminar was Professor Dr Chandra Muzaffar who spoke on Access To Dignity: Compassion In Action.

Chandra, who is professor of global studies at Universiti Sains Malaysia, pointed out that disabled facilities are a lot better today compared to the 1950s and 60s when he was growing up in a small town in Kedah.

“As a polio victim, I was acutely conscious of how little access there was in the public and private spheres for the physically challenged,” said Chandra.

He pointed out the reasons why this change took place over the last few decades. In the last 30 years, global awareness of the disabled and their rights has been increasing steadily.

The United Nations declared 1981 the International Year of Disabled Persons. Since 1992, Dec 3 has been observed as the International Day of Disabled Persons.

In 2006, the UN adopted the International Convention on the Rights of Persons with Disabilities. This convention is a landmark document which recognises the dignity of the disabled and their right to access justice.

“It is partly because of increasing global awareness that building by-laws in Malaysia were amended in 1990 to provide access to the disabled,” said Chandra who serves as president of the International Movement for a Just World.

Owners of public buildings were given three years to make adaptations, he added. “However, although the Malaysian Parliament passed the Persons with Disabilities Act in 2008, it has a major flaw. It does not provide for penalties against building owners or institutions that manage public places that fail to comply with rules and regulations that cater for the disabled.

“Last year, Malaysia also ratified the International Convention on the Rights of Persons with Disabilities with some reservations,” said Chandra.

Poor enforcement
Some crucial provisions of the Disabilities Act and the International Convention have not been implemented. For instance, at least 1% of employment opportunities should be reserved for persons with disabilities. This has not been done.

There has been no serious attempt to systematically enforce access to public buildings.

“On the whole, enforcement of the recognised rights of the disabled has been glaringly weak,” noted Chandra, who is adviser to the Malaysian Animal-Assisted Therapy for the Disabled and Elderly Association.

“When you fail to enforce or implement effectively, you fail to deliver justice. You fail to uphold the dignity of the weak and vulnerable in society.”

Chandra pointed out that the way to overcome this is for citizen groups to apply pressure on decision-makers to fulfil their responsibilities to the disabled.

This calls for the end of complacency, certain cultural inhibitions and corruption. Citing the changes brought to the disabled in the United States through the Vietnam War veterans, Chandra pointed out that change was also taking place in the same way by citizen groups and individuals in Malaysia.

“An outstanding example is the city of Petaling Jaya which is increasingly becoming more wheelchair-friendly.

However, individual and collective efforts alone will not be enough to achieve the physical and social transformation that the disabled hope for.

The mindset of the average Malaysian will also have to change.

The disabled do not wish to be seen as objects of pity and charity. They want access to opportunities and justice.

The disabled want to be respected as human beings with dignity, a sense of honour and self-esteem.
For able-bodied Malaysians to recognise the dignity of the disabled, they will have to substitute their feelings of pity and sympathy with a profound sense of compassion.

Sympathy may sometimes conceal a feeling of condescension towards someone who is not quite your equal.

“Compassion, on the other hand, is that ability to put oneself in the other person’s shoes and empathise with her pain and suffering. It is when one is truly compassionate that one cares genuinely for others. PJ, which has begun to care for the disabled, should aim to become the first compassionate city in Malaysia,” concluded Chandra.

Give The Disabled A Hand

2011-01-06T16:03:00.000+08:00

Thursday January 6, 2011

Give the disabled a hand

WHEEL POWER
By ANTHONY THANASAYAN

Do your bit for the disabled and elderly.

IT may be almost a week into the new year but it is never too late to work on our resolutions for 2011.
Here’s a list to help you along, especially if you want to make a difference in the lives of the disabled and the elderly.

Some of them may take a little time and effort on our part. Others, however, are quite simple to accomplish; they call for consideration and kindness to our fellowmen. Here are some things that we can do:

In the home:

> Be a friend to a disabled or elderly person. Most people may not realise it but it isn’t easy to find friends when you have a handicapping condition. People who are not disabled may avoid persons with disabilities for a number of reasons. Some of them do so for reasons of awkwardness – they do not know what to say for fear of hurting the person with some insensitive remarks. Others just fear disabilities. And others still, do not like to be reminded that they themselves may become handicapped one day through illness, an accident or old age. It is important to remember that people with disabilities are just like any other person. Many disabled people, especially those living alone, would greatly benefit from having a friend.

> Offer to collect their medication or do their marketing when you do yours. Take an elderly person in a wheelchair for a stroll in the nearest park. If the park is not wheelchair-friendly, write a complaint letter to the local council and then follow up on it until the problem is fixed. You can also offer to help bathe a bedridden patient, especially if the caregiver is a woman and finds it a gargantuan task to get her loved one out of the bed. Other areas where you can help: help walk the dog, feed the cat or clean the aquarium.
In public:

> “Never park in a disabled car park if you are able-bodied unless you want to also take the disabled driver’s handicapping condition with you,” says a local council notice at a parking spot for the disabled.

> When you see a person in a wheelchair or on crutches trying to cross the road, stop your car. Try doing that some time and see how good it feels, especially when they give you a big smile of thanks afterwards.

> If you are in a packed lift in a shopping complex and notice a disabled person in a wheelchair waiting outside, offer him or her your space. Use the stairs instead. This actually happens often in countries outside of Malaysia – and frequently by people from such countries when they visit ours.

In government outfits:

> Can we please go back to the time when counters were set up for the disabled and elderly? They were a big help then but now even hospitals and buildings which used to have such counters, have done away with them.

> Can we have sign language interpretation for more programmes on RTM instead of only the prime-time news? And when are the other television stations going to follow RTM’s fine example and start making their news accessible to the Deaf?

> Let us not forget the blind. They need talking lifts (to tell them which floor they are at), equal access to automated bank teller machines, and tactile flooring (those yellow tiles with grooves that we see in some places). Let’s not forget that these need to be built inside the buildings as well as outside. It is most frustrating when you manage to find your way to a particular building, and then have no clue as to where the information centre, toilets or lifts are.

Have a great year ahead!

A memorable 2010

2010-12-30T16:28:00.000+08:00

Thursday December 30, 2010

A memorable year

WHEEL POWER
By ANTHONY THANASAYAN

IT’S TIME to say “So long” to another incredible year before welcoming a brand new one this weekend.

Let’s look back at some of the most exciting and memorable moments of this column.

I started the year by writing about the first anniversary of the death of my Rottweiler, Vai, which had succumbed to cancer. He was truly my hero as a personal service dog. Even now, nearly two years after his passing, I still miss him dearly.

Vai was largely responsible for turning my life around – from depression to positive living. He taught me everything I know about disability.

Never let anyone put you down in your wheelchair – that was what Vai taught me during his 13 years with me. In his eyes, anyone in a wheelchair was “normal”.

Vai turned out to be the best psychiatrist, rehabilitation specialist and best friend that I ever needed to get on with life.

The year 2010 brought about a couple of noteworthy turn of events.

The first was a protest by a dozen handicapped people earlier this year at the Malaysian Anti-Corruption Agency (MACC) building in Kuala Lumpur.

We were mad over an incident in which a MACC senior officer directed a mocking remark at a lawyer in a wheelchair.

We were surprised and touched when a swift apology was graciously issued by MACC chief commissioner Datuk Abu Kassim Mohamed in a letter the following day.

More recently, the Ipoh City Council (MBI) offered an apology when its dog catchers accidentally shot dead a therapy dog named “Spunk” which belonged to an elderly woman.

The MBI has banned dog-shooting in the city and promised to set up a canine committee to handle the stray dog problem.

In March, psychiatrist Dr Andrew Mohanraj shared with us that although mental illness had been recognised as a disability in 2009, there was still a great need to understand and offer unflinching support to people who have the condition.

One of the first steps in doing so is to educate ourselves about the disease.

In April, the Malaysian Parkinson’s Disease Association signed a global declaration of People with Parkinson’s in front of 200 people, including their caregivers and supporters.

A few weeks ago, Minister of Women, Family and Community Development Datuk Seri Shahrizat Abdul Jalil brought glad tidings when she said she would do everything she could to get people with Parkinson’s (PwP) officially registered as people with disabilities by early next year. This will enable the more than 15,000 PwP to qualify for free medical aid.

Numerous horror stories about buildings which are inaccessible to wheelchair users are featured in this column each year.

The worse was the KL Social Welfare Department on the ninth floor of Grand Seasons Avenue.

The toilets for disabled men and women in separate sections were too small and did not have proper fittings. Shower curtains were used as doors!

It was shocking that the disabled who visit the welfare department had to put up with this for years.
Prompt action was taken when this matter was highlighted in Wheel Power.

I visited the place again just before Christmas. Now the toilets are big enough for wheelchairs and there is a beautiful sliding door to provide privacy. Well done!

Last, but not least, blind golf, anyone?

Yam Tong Woo, 57, who lost his sight following a bacterial infection, shared how he picked up the pieces with the help of his family. Now he’s back to doing what he loves most – playing golf.

Just how on earth does he do it, you may ask. With the help of his wife who is his caddy. Yam was in Singapore during the last Raya holidays to take part in an inaugural golf tournament called the Handa Singapore Classic.

So when people tell you that you can’t do something because you are disabled, don’t you believe it. Just get out there and do it!

Happy 2011, everyone!

Room for caring

2010-12-23T14:04:00.000+08:00

Thursday December 23, 2010

Room for caring

WHEEL POWER
By ANTHONY THANASAYAN

Practising what you preach.
UNTIL I read the story of the nativity all over again recently, I never realised how much people with disabilities could relate to Christmas.

And it wasn’t until I went through each amazing account in the Bible that the hidden truth suddenly dawned on me – from the angel announcing the conception of the child to being turned away at the cramped inn and finally to the blessed birth in a humble manger.

Even baby Jesus – who is the reason for this glorious season – knew exactly what it felt like to be unwanted and have no place in society.

“No room at the inn” was what his distraught parents were told as they frantically looked for a place to birth him.

“No room”, “no access”, “no ramps” and “no disabled toilets” are common phrases Malaysians with physical handicaps still hear today.

And yet, many of us don’t even flinch a muscle when we stand up and declare that Malaysia is a caring society.

Some of these most uncaring and unfriendly buildings are, ironically, churches and other places of worship that are supposed to stand as pillars in a caring society.

Although they speak about the disabled and the elderly often, and preach to their congregation about the importance of “love” and “the need to think of others”, their actions and architecture often tell a totally different story.

I was talking to a member of the board of a local church only last week about adding a wheelchair ramp and a disabled-friendly toilet when her response took me by surprise.

“Oh ye of little faith,” she said, as if quoting a passage directly from the holy book.

“You don’t need to use a wheelchair. Just come to our church and we’ll pray over you and you will walk again.

“You’ll become one of us, and then there will be no need for ramps or disabled toilets, Hallelujah!”

Years ago, another lady who was an elder in the local church which I used to go to told me the same thing.
She was the epitome of health, and anyone who got sick rushed to see her so that she could pray over them.

Even those with permanent disabilities and terminal illnesses sought her prayers as they believed they would be healed.

We eventually lost contact, but out of the blue, I got a call from her.

Speaking to me on the other end of the telephone line was a totally different person. I hardly recognised her.
Her voice was weak and frail. It was clear that she was also extremely depressed.

And then she made the most astonishing revelation.

She told me that she – now in her 60s – was a disabled person, too.

She was told by a doctor that she had Parkinson’s disease.

In fact, the medical specialist had told her that she had had the insidious condition for several years but she was not aware of it.

Her first reaction, she said, was to reject it. She prayed, fasted and even went to other faith healers to shake it off.

But nothing worked. Only medication could slow down the effects of the disease.

When she started using a wheelchair, she lost her independence and she had to be cared for by a maid.
She lost her job and eventually all her friends too.

She found it difficult to manoeuvre around in her church as it has no ramps or wheelchair access.

She had to hold on to her weak bladder until she got home because it has no toilet for the disabled. Several times, she had embarrassing “accidents” in public.

She told me that she now realised what a terrible mistake she had made. “I should have fought for people like you then in the council, but I never dreamt that something like this could happen to me.”

I couldn’t believe that the woman, who was once hostile towards me, had now become my friend – albeit over phone conversations late into the night.

She wanted to learn as much as she could about disability. I, too, learnt so much from her and how she was coping in life until she passed away, six months later.

Physical handicaps are only one aspect for a caring society to consider. The blind, deaf, people with learning disabilities and those with multiple handicaps also deserve attention.

Then, there are other conditions that are brought on by heart attacks, stroke, diabetes and old age.

Will we open our doors to all these people in our lives? And what would happen if we too find ourselves looking for room at the inn one day and being turned away?

Merry Christmas from Wheel Power!

Christmas cheer

2010-12-16T21:31:00.000+08:00

Thursday December 16, 2010

Christmas cheer

WHEEL POWER
By ANTHONY THANASAYAN

Glad tidings for the disabled community.

CHRISTMAS may be 10 days away. But for people with disabilities (PWDs) in the country, Santa has brought good tidings early.

Four representatives of disability groups – including me – made a special visit to the Ministry of Women, Family and Community Development in Kuala Lumpur last week. We went there to personally meet the Minister, Datuk Seri Shahrizat Abdul Jalil.

We have some pressing issues confronting PWDs in our society, which we wanted to discuss with her.
The NGOs from Kuala Lumpur were the Malaysian Animal-Assisted Therapy for the Disabled and Elderly Association, Malaysian Parkinson’s Disease Association, and Dyslexia Association of Malaysia.

The fourth group was the Independent Living and Training Centre from Rawang.

Although Shahrizat was late for our appointment because she was held up in Parliament, she wasted no time in getting down to listen to our requests.

Here’s what we told the Minister:

> Please get all the local councils everywhere to set up disability committees: This is the only way for significant and positive changes to happen for all disabled persons or orang kurang upaya (OKU) in the country.

Currently there are building bylaws in every state that require accessibility for PWDs. However, many local councils choose to ignore them.

The (OKU) committee will serve as a driving force for each council to build a disabled-friendly environment both inside and outside buildings.

They must represent the full scope of PWDs from the blind and Deaf to the physically disabled. They must meet at least once a month if it is to be effective. It is only after buildings and pavements are made accessible to wheelchairs, that the disabled can successfully hold jobs.

Children in wheelchairs can also go to school and be educated instead of becoming a burden to society later on in life.

The minister had no problem in seeing eye-to-eye with us. In fact, she reiterated our views by saying that it was only right that PWDs be involved in decision-making processes that affected them.

She even went on to say that “able-bodied people know nuts about the handicapped – and that’s why the disabled’s participation is vital.”

She promised us that the ministry will start a campaign as soon as possible to get local councils to set up the special committees. It will start with a seminar for all local councils next year.

Meanwhile, head of local councils in Selangor Ronnie Liu, when met earlier by a representative of the same group, said he would be sending a directive to all 12 local councils in the state to set up disability technical assistance groups.

A “starter kit guide” on how to do this is currently being prepared by a town planning expert. It is expected to be handed over to Liu within the next couple of weeks.

MBPJ is currently the only local council in Selangor that has an active disability committee that meets once a month.

> Please register people with Parkinson’s disease as PWDs. Currently those suffering from Parkinson’s disease can’t qualify for welfare cards and can’t get free treatment.

Shahrizat said her ministry will discuss the matter with the Health Ministry.

> Other issues: The minister will look into improving the quality of lives of people with learning disabilities, especially in care homes and centres.

She will also look into offering help for the profoundly disabled. In some countries, the government pays for the services of caregivers of tetraplegics.

Finally, a special committee will be set up to study ways on how to protect the elderly from abuse and neglect in the family, based on laws in Singapore that allows for court action.

Creating a better future for the disabled

2010-12-09T15:05:00.000+08:00

Thursday December 9, 2010

Creating a better future for the disabled

Wheel Power
By Anthony Thanasayan

Governments need to keep their promise to the disabled.

WITH the year 2010 coming to a close in a matter of weeks – and the observance of International Day for Persons with Disabilities (IDPD) having taken place on Dec 3 – the handicapped community the world over is eagerly looking forward to a better future.

Disabled Peoples International (DPI), one of the best-known worldwide disability rights groups, in its statement, drew attention to the key goals of the IDPD which was established by the United Nations in 1981.
IDPD’s aims are to bring about a better understanding of disability and how it affects the people who have them, said DPI.

“Disability must be seen as a human rights issue and people with disabilities (PWDs) must be integrated into every aspect of society – at the political, social, economic and cultural levels,” it added.

The NGO is pleased to note that its ambitions to get the commitment of various governments to provide an international policy framework for better access and high-quality living for its disabled citizens was strengthened two years ago with a 2006 key document called the “Convention on the Rights of Persons with Disabilities” of which Malaysia is a signatory.

The Convention is meant to give an impetus to governments to make good their promise to keep to the disability rights agenda for their respective handicapped communities.

Whilst this is a positive step forward, DPI sadly notes that there is still a gap between government policy and practice.

Wheelchair activist Chong Tuck Meng from Bentong, Pahang, firmly believes that changes can start happening with some simple steps.

Chong, 49, who was paralysed from the neck down after a motorcycle accident 30 years ago, suggests a mind-shift about who disabled people really are.

“Just as how ‘re-branding’ is vital to a product, it’s time to change our present condescending and negative attitudes towards PWDs,” Chong told Wheel Power.

“Let’s get rid of the present ‘Orang Kurang Upaya’ term in Bahasa meaning ‘persons who are less capable’ to something which is more positive like ‘Warga Istimewa’ or ‘special citizens’, he adds. “It’s just like how we now refer to older persons as ‘warga emas’.”

Chong says he thinks there will be much more dignity and respect if society would look at disabled people as a special group instead of being seen as the “less fortunate” or “less able”.

“Let’s also please stop pitying PWDs and regarding them as objects of charity,” Chong points out. “Doing this during the festive celebrations may make the giver feel good but it’s often a different story for the recipients who are then forgotten for the rest of the year.

“Earning an income for the handicapped should go beyond common stereotypes such as selling lottery tickets, packs of tissues and what not. The government can play a role in changing such perceptions by organising special projects that highlight the talents of PWDs in order to instil public confidence in the abilities of the disabled.

“They can do much more to get employers to give them jobs; as well as help in their special needs, such as making their offices accessible to wheelchairs, give a special allowance for transport, etc.”

Private telecommunication companies can also exercise their corporate social responsibility by giving meaningful discounts (and not just tokens) and even waivers to disabled subscribers so that they can better communicate with the outside world.

Chong says with petrol and other prices going up, a RM500 monthly allowance for all disabled people in the country would be the right and timely gift to the community.

Chong concludes that it is time for everyone to get tough with the use of laws to protect the disabled and their rights.

“Let’s promptly tow all cars belonging to the non-disabled at handicapped parking spots and come down hard on local councils that ignore building bylaws that require disabled access in towns and cities everywhere.”

Chong is a founder member and adviser of the national disabled society in Kuala Lumpur called Perwira K9 Malaysia. He also plays the same roles for Budi Penyayang and Wheelchair Basketball in Pahang.

Special Article: Role of Councils in Disabled-Friendly Society

2010-12-03T14:30:00.000+08:00

Friday December 3, 2010

The role of local councils to create a disabled-friendly society

By ANTHONY THANASAYAN

As the country celebrates International Day of Persons with Disabilities today, we look at the role of local councils in the making of a disabled-friendly society.

THIS year’s celebration of International Day of Persons with Disabilities is cause for double joy for me as a person who has lived with a disability all my life. This is because I turned 50 last month on Nov 21.

Turning 50 is a big achievement for anybody, especially when they have been told they would never make it that far. The doctors told my parents that because of my congenital condition known as spina bifida, I would not make it past adolescence. Well, here I am, proving those clueless doctors wrong.

More bad luck struck when I was 10 years old. I was forced to go for a leg operation to straighten my knee so that I could use callipers to walk. However, it made my legs worse as I lost whatever sensations I had earlier.

Again, some bad doctors were clearly using me as a guinea pig in the hope of becoming famous, if the operation was a success.

I had to stop schooling at Standard Four because the school authorities said they my wheelchair could not fit in the classrooms and toilets. And I couldn’t get out of my house because the whole environment was hostile to my wheelchair.

There were no pavements in Klang, Selangor, where I lived; and if there were, I couldn’t get my wheelchair on it. Once a car grazed the side of my wheelchair and damaged the wheel. I was about 10 years old then, and my grandmother was pushing my wheelchair. It was a terrifying experience for both of us.

Thoughtful move: There are ample parking lots for the disabled at Sunway Carnival Mall Seberang Jaya.

During my teenage years I moved to Petaling Jaya. However, the situation was worse in the neighbourhood’s public park.

I couldn’t access it for years because the local council kept the gates closed except to their official vehicles. There were no kerb cuts in the pavements.

Even if someone carried my wheelchair on it, it was of no use. The pathway would suddenly narrow down to a point where only one person could get through, or a lamp post or some other hindrance would appear right in front of you.

Despite the fact that many of the shops were near my house, I could not access any of them because of the many steps and uneven floor levels in the buildings.

All these made me very depressed. However, I soon discovered that all these negative thoughts that society was feeding into my mind was really a big lie.

My break came when I took part in an exchange programme and went to live in the city of Eugene in Oregon, the United States, for a month. It was a wheelchair heaven for people with disabilities. I took my first bus ride there.

The buses were equipped with wheelchair lifts. These amazing gizmos would magically unfold from the vehicles at the push of a button.

The pavements were fully accessible to wheelchairs. I could go into supermarkets and virtually every public building; doors would open automatically when I approached or at the push of a button. Some were even voice-activated.

Wheelchair-accessible toilets and proper ramps were available everywhere.

Although most Americans were always ready to lend a hand to anyone in a wheelchair, there was no need for it because of the accessibility all around.

The biggest thing that I learnt from my stay in Eugene was that I was not the problem – society was!

This was because society failed to provide the necessary facilities for all its citizens. So you can imagine how thrilled I was when I was appointed as a councillor in the Petaling Jaya City Council (MBPJ).

My first task was to get an active disability team into the council in order to provide vital information regarding their many needs.

The MBPJ’s special committee today has representatives with a wide range of disabilities.

We have the blind, Deaf, people with learning disabilities, stroke patients and even those with mental illness.

These people would be in the best position to articulate their needs. We have also included caregivers of disabled persons.

One of the unique things we have considered is building shelters for car parks for the disabled so that users can be protected from the elements, considering the extra time they need to get in and out of their vehicles.

All new buildings will have to come to our committee first for approval of their disabled-friendly facilities before they get the green light to proceed with their projects from a higher committee.

The MBPJ is also making a special effort to ensure that homes for the disabled and elderly are fully equipped with proper features for the benefit of every user.

One of our proudest achievements is a 500m stretch of pavement along Jalan Gasing, Petaling Jaya, that is universally-designed. It is 90% complete. Once it is ready, everybody – from the elderly with walking difficulties to mothers with prams, children and the blind – will stand to benefit from it.

However, there were some opposition to the project, with some saying that it was a waste of money. Some of these complainants are more than 60 years old. Don’t they realise that they are growing older by the day and could very well become disabled, too, following a heart attack, stroke or some other condition?

It is high time that all of us realise that disabilities are increasing rather than decreasing, and that it is a natural aspect of the human condition. Rather than pretending that it doesn’t exist through fear or ignorance, all councils should start planning for the aging citizens in society. To do that, it is vital for all the departments in the councils to coordinate their efforts to see each and every project through.

As a disabled activist, I used to think that the answer towards creating a disabled-friendly world lay with the welfare ministry or even the Prime Minister. Now I realise the answer lies with each and every local government.

It is these institutions which hold the keys to a better future for all disabled Malaysians.

And the first step towards bringing about effective change is to involve the disabled community in consultation with the local councils.

My wish today is that every local council in the country will set up a disabled committee of their own with
active participation from the handicapped community to bring about a better future for the latter.

Counting their blessings

2010-12-03T00:52:00.000+08:00

Thursday December 2, 2010

Counting their blessings

WHEEL POWER
By ANTHONY THANASAYAN

Celebrating life in a silent world.

TOMORROW is International Day of Persons with Disabilities. No matter who you are, or what type of disability you have, the best thing to witness on this special day is to see the able and disabled coming together to learn from one another.

I was among 80 hearing participants at a one-day sign language class last Saturday. The class was jointly organised by the Lion’s Club and the Petaling Jaya City Council (MBPJ).

I was surrounded by excited participants who were waiting eagerly for the class to begin. Many of them were young people who were learning sign language for the first time.

Sign language is the language of the Deaf. Instead of being forced to read lips, a growing number of Deaf people prefer to use sign language to communicate. It is a system of hand and body movements representing words, which is used to by people who cannot hear or talk.

Sign language is a more natural form of communication compared to other methods. Those who use it vouch that it is a unique language that enables one to express his or her innermost thoughts and emotions.
Despite the many obstacles that the Deaf face in Malaysia, it is amazing to note how much the Deaf community has progressed in recent times. For instance, the Deaf prefer to use capital “D” in spelling out the word “deaf” when a general reference is made to them.

This is to draw a clear distinction from their physical and medical condition compared to the rich life they enjoy and celebrate in a silent world. In fact, quite a few Deaf people are so contented with their lives that they are no longer interested in the ability to hear. They wish to carry on as they are.

This may be difficult for us to understand because we depend so much on sounds. However, for the Deaf, the world of sound has little or no relevance to them.

Yogeswari Chaujer is a Deaf lecturer at Limkokwing University of Creative Technology. Besides being a strong advocate for Deaf students at the university, Yoges also conducts workshops on social issues such as child sexual abuse, sexuality and relationships.

In an e-mail to Wheel Power, Yoges highlights her concerns for the Deaf community:
> The Deaf need a good outreach programme. Deaf children need to be reached out to as early as possible in their lives. All Deaf children should go to school. They need to be taught sign language. Older kids need to be started on speech therapy programmes with their parents playing a supportive role.
> Sign language skills are a must. Some parents of the Deaf do not make an effort to learn sign language. Without it, there is a serious breakdown in their communication channel. The Deaf individual becomes vulnerable without any guidance from his/her parents.

Yoges recalls an incident in which she had to deal with an 18-year-old who had no understanding of her menstrual cycle. She was terrified that she would bleed to death.

> Better education system for the Deaf: The Education Ministry’s recent promise to bring in more than 300 foreign experts to monitor and teach English to local teachers should also be applied to the Deaf. Foreign Deaf experts should be brought in to teach the Deaf.

Currently, there are many teachers in Deaf schools who have a poor grasp of the sign language, and limited knowledge of the Deaf culture. Yoges points out that during a recent visit to a Deaf school, she came across a teacher who was desperately trying to make her hearing-impaired students understand her by talking to them!

She also cites the Government’s generosity to the disabled community by giving students pursuing higher education, about RM3,600 a year in the form of allowances and RM1,400 for payment of fees for a year. However, it’s like the proverb: “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime”.

“Therefore, if good education is given from the start, the Deaf community would be independent and be on the right track in securing better jobs.”

Learning from Spunk

2010-11-25T08:13:00.001+08:00

Thursday November 25, 2010

Learning from Spunk

WHEEL POWER
By ANTHONY THANASAYAN

Ban brings some relief for dog owners.

LIFE is a great teacher – whether you are able-bodied or a person with a disability.

My adventure last week proved to be a perfect example.

By now, many of you would have heard the fantastic news from Ipoh that is still causing waves of celebration among animal lovers.

The Ipoh City Council (MBI) decided to ban the shooting of dogs.

This came into effect after a therapy dog named Spunk belonging to a retired senior woman had been shot dead by mistake.

The lady and her dog were members of Petpositive, a national animal-assisted therapy society in which I serve as president.

I was privileged to be among the local animal welfare groups that met MBI officials on Nov 16 when the ban was declared.

Prior to the event, none of us knew what the outcome would be.

However, my NGO and others in Ipoh felt strongly that our mission was to meet the council as quickly as possible to try and voice our opinions about the shooting.

A major part of my motivation came from my personal involvement in two canine committees of the Petaling Jaya City Council (MBPJ) and the Klang Municipal Council (MPK).

I chair the monthly Canine Advisory Team (CAT) meetings in PJ and Klang, and all the relevant bodies in the government related to animals attend these meetings together with a local representative from the department of veterinary services.

Reps from various animal welfare and rights NGOs also participate with their ideas in our CAT meetings.
In MBPJ’s CAT meetings, we go a step further by inviting to our meetings all the local councils in Selangor that deal with dogs.

Over the weeks and months, we’ve learnt that the participation from all sides has significantly strengthened us as a group as we come up with the best decisions, actions and solutions when dealing with complaints from the public.

In most cases we’ve discovered that it is never the fault of the dogs, cats or even rats when there is a problem with them.

Instead, it is our irresponsible behaviour as human beings that causes and exacerbates a problem, such as abandoning our pets or encouraging them to mess up other peoples’ homes when they run out of our compounds unattended or throwing rubbish indiscriminately and creating a never-ending food source for rats.

As an effective strategy, we have moved towards engaging in more educational programmes for pet owners with the full realisation that just because someone has a pet, it doesn’t necessarily mean that he or she knows how to look after them.

This was the main message that we managed to get across to the top brass of the MBI through our memorandum and discussion.

We pointed out to the MBI that Spunk and his owner were exemplary residents of the city. The woman never failed to renew her dog licence each year and always picked up after her dog during their walks.

“The MBI should have given her an award for her responsible act and used her example to serve as an inspiration to other pet owners,” we said.

On its part, the MBI graciously admitted its serious error in allowing Spunk to become a casualty.
The council even went so far as to say that a representative would visit Spunk’s owner to offer its sincerest regret and condolences.

“Spunk has taught us all a sober lesson,” said a top brass from the MBI during an emotional moment before announcing the immediate end to dog-shooting.

He also promised to get a monthly canine committee going – much like CAT – and would look into spaying strays as well as setting up a dog pound as soon as possible in Ipoh.

Let’s hope that when this new canine committee gets off the ground (it was announced that the first meeting will be held before the end of the year), it will also look into giving free dog licences for the disabled and reduced rates for the elderly just like in MBPJ and the Shah Alam City Council.

In view of what happened to Spunk, all local councils should also consider issuing special tags and licences for therapy and service animals to prevent them from being caught.

And if the dogcatchers get them, they should be returned to their owners at once.

Despite the many cases of cruelty and harsh treatment of pets in our society, it is most heartening to witness that at least some local councils are starting to move in the right direction by choosing a more mature, caring and effective response when it comes to dealing with animal issues in the country.

Stop shooting dogs

2010-11-18T15:54:00.000+08:00

Thursday November 18, 2010

Stop shooting dogs

WHEEL POWER
By ANTHONY THANASAYAN

There is an urgent need for a Bill to protect animals.

THE senseless and cruel shooting of a therapy dog in Ipoh recently was a big setback for Petpositive, an animal-assisted therapy organisation for the disabled and elderly.

The canine, Spunk, was shot dead by the local council (MBI). Spunk belonged to a 75-year-old retired teacher living in Taman Merdeka.

The courageous canine lived up to his name in every way. For 10 years, Spunk served as a faithful watchdog and kept his owner company after her husband passed away.

Before anyone – or anything, for that matter – could even approach the front gate, Spunk was already there. This kept his owner safe and secure, especially during the night.

Spunk was also the elderly woman’s best defence against loneliness. He provided her with the motivation to exercise as she had to take him for his daily walks.

From what I heard from the owner, Spunk was also very popular with the neighbours. They all loved him.
In spite of her age, Spunk’s owner was a responsible pet owner. She would always bring along tissues to pick up her dog’s poo whenever they were out for walks.

However, on the morning of Oct 30, she forgot the tissues and went back into the house to get them, leaving Spunk at the gate.

Unfortunately, at that time the dog-shooters were doing their rounds. Seeing their vehicle, Spunk panicked and fled for his life.

Instead of exercising discretion in the situation, they hunted down the dog and shot him in cold blood. They showed no mercy even though Spunk had a valid dog licence around his neck.

His death made a mockery of the laws of the land which required that pet dogs be registered.

To make matters worse, the MBI quickly carted off the carcass before Spunk’s owner could see him. All that was left were traces of her best buddy’s blood splattered on the road.

Does the MBI realise what they have done? Not only have they robbed an elderly person of a friend and companion, but by carting the animal away without allowing her to see it, they have also denied her the chance to properly grieve over the loss of her dog.

Now she is left alone in an empty house filled with memories of Spunk.

And to think that we consider ourselves far superior to other living things.

Even animals in the wild take time to grieve over a loss at the risk of being consumed by predators in the process.

This brings me to the second incident: the passing away of Dusty, one of the few service dogs in the country.
Dusty passed away on Nov 6, and was buried in the compound of his home in a centre for the disabled where he had served for the past 10 years.

The Golden Retriever was a source of joy and inspiration to the residents at the centre.

“Dusty was trained to seek help from our neighbours in times of emergency,” said one of the residents at the centre.

Last week, a group of animal rights activists – including the disabled in wheelchairs – met up with Veterinary Services Department director-general Datuk Dr Abdul Aziz Jamaluddin in Putrajaya.

Following the meeting, the DG agreed to an immediate ban on dog-shooting in the country.

A protem Animal Welfare Council will be convened next Thursday. It will be chaired by Dr Abdul Aziz, who had mooted the idea.

The council will cover all aspects of animal welfare. Its main agenda is to push for the first-ever Animal Welfare Bill to protect all animals.

A Whole New World

2010-11-04T22:45:00.000+08:00

Thursday November 4, 2010

Training centre for disabled opens up a whole new world

WHEEL POWER
By ANTHONY THANASAYAN

A positive attitude can work wonders for one’s well-being.

LETCHUMY Krishnan, 25, is one of the most active residents of the Independent Living and Training Centre (ILTC) in Rawang, Selangor.

She cleans, cooks, sews, makes handicraft items and does the weekly grocery.

However, Letchumy, a wheelchair user, wasn’t like this when she was living with her mother in Taman Sri Muda in Shah Alam.

Letchumy was born on April 1 at the General Hospital in Klang. She was joined from the head with her twin sister.

The surgeons wasted no time in separating the conjoined babies. Sadly, Letchumy’s sister died three months later. By then Letchumy was diagnosed with cerebral palsy. Her distraught father abandoned her.

“Dad left us when I needed him the most,” Letchumy said.

Letchumy’s mum, however. never gave up on her little girl. With her meagre income from packing drinks at a factory, she continued to support her children. She enrolled Letchumy at a Tamil school near their home.

As they had no car, a friend offered to transport her daughter to school. Class attendance, however, was irregular depending on whether there was transport.

Letchumy was able to walk with some support. As a student with a disability, Letchumy was unable to use the school toilet as it did not have disabled-friendly features. She was excused from assembly and sports which she loved so much.

Letchumy stopped schooling after the doctors did an operation to improve her condition. The operation left her worse off when she lost some sensation in her limbs.

Letchumy soon found herself confined to her flat, which was on the third floor. “It was a lonely life. There were no lifts in my flat, so I couldn’t get out and make friends.”

One day, Letchumy and her mother were listening to RTM’s Radio Six, when a special live interview programme with several disabled activists came on.

One of them was Francis Siva, president of ILTC.

“My mum and I couldn’t believe our ears when we heard that disabled people were leading useful lives at the ILTC,” said Letchumy. She enrolled at the centre within two days.

“Suddenly, a whole new world opened up for me,” said Letchumy.

Letchumy learnt to speak English and Bahasa Malaysia. She also learnt to use a computer for the first time.

“I want to focus on starting a new life. My mum is proud of my achievements,” said Letchumy.
Letchumy is looking for employment outside the centre. If you can help, call ILTC at % 03-6091 2531 or e-mail: iltcmalaysia@gmail.com.

Halloween fun

2010-10-28T13:57:00.000+08:00

Thursday October 28, 2010

Halloween fun

WHEEL POWER
By ANTHONY THANASAYAN

Get ready for a good scare this Sunday.
IT WILL be Halloween this Sunday. People the world over will be taking part in fun activities at night. These will include trick-or-treating, wearing costumes and visiting haunted houses and places to have a screaming good time.
In Western society where the annual holiday originated, people with disabilities like the blind and the physically handicapped in particular, will often join in the fun with the able-bodied to carve jack-o’-lanterns, create bonfires and go on ghost tours.
I recall being invited to one Halloween costume party in Kuala Lumpur a few years ago. It was organised by a local radio station. I had such fun that day.
Whilst everyone else came dressed up as vampires, werewolves or some other ghastly creature, I turned up in my wheelchair.
There was a good reason for using my wheelchair as a Halloween costume in itself. After all, wheelchairs do frighten a lot of people.
I’ve discovered over the years that people are generally afraid of them because of the realisation that a time may come when they might have to sit in one – God forbid – because of a disease, accident, or old age.
However, being in a wheelchair doesn’t mean that life is over for the individual.
In fact, people who have lived in wheelchairs long enough will tell you how fantastic life can be once you have made the right decisions. And disabilities can enrich one’s perspective of life.
My interaction with the vampires and other monsters at the costume party that day proved to be a plus point for both sides. For me it was a great opportunity to be included as a disabled person in a normal activity.
By interacting with me, many of them told me that it was their first time meeting and chatting with a disabled person.
By the time the curtains came down that evening, the masks all came off and wheelchairs were no longer an object of nightmares for anyone.
This Sunday some of my disabled chums are looking forward to playing harmless pranks on their able-bodied friends. Others say they are looking forward to watching horror films with their families and neighbours. And others still, are waiting to scare their chums with some truly frightening stories.
Here is a ghost story sent by a blind individual who wanted me to share it with readers of this column. The writer, who wishes to remain anonymous, attests that it is a true encounter.
He writes: “It was exactly a week before I became blind. I was alone in my apartment at night, following an episode of diarrhoea and high fever. There was also an irritating discomfort in my eyes.
“Suddenly, I felt the eerie presence of several uninvited guests in my room. I struggled to open my eyes, and watched in horror as a male stranger walked slowly past by me and across the bedroom. He headed straight out of the window. He was carrying a small bag in his hand and looked emotionless. Then, suddenly, another stranger did the same thing and jumped out of the window. My hair stood on ends and a shiver ran down my spine.
“I kept the lights on out of fear and couldn’t sleep that night.
“My condition worsened the next day and I was admitted into hospital. I was put on drips. Then, to my horror, I saw strange beings mingling with the nurses as helpers in the ward.
“When the nurses left, two of the beings, both males, walked over to my window and leaned and looked out. They looked like westerners and were dressed in white.
“I just stared at both of them until I became very tired and fell asleep. When I woke up, it was just before dawn. The strangers were no longer around.
“That was the last encounter with such unexplained beings before I woke up to a completely dark world. I had become blind.”

Budget Brings Cheer To Disabled

2010-10-21T21:49:00.000+08:00

Thursday October 21, 2010

Budget brings cheer to disabled

Wheel Power
By Anthony Thanasayan

Budget 2011 brought some relief for the disabled.
MALAYSIANS were glued to their television and radio sets last Friday, listening to the Budget 2011 speech by Prime Minister Datuk Seri Najib Tun Razak in Parliament.
Chong Tuck Meng, 50, from Bentong, Pahang, was one of them.
“I am pleased to note that the Women, Family and Community Development Ministry has been allocated RM1.2bil in aid, of which RM218mil will be used to assist some 80,000 disabled individuals,” says Chong.
“However, it was not stipulated how the money would be used to help them,” he adds, pointing out that previous programmes organised by the Welfare Department had not done much to improve the quality of life of the handicapped.
Chong, who was paralysed from the neck down following an accident 30 years ago, is now adviser of Perwira K9, an NGO which he founded. It has about 700 members with spinal injuries.
Chong also recalls a pre-Budget meeting called by the ministry about six months ago.
“There were too many special focus groups involved and everyone seemed to be all over the place. There wasn’t enough time for real discussion. Some of the disabled groups that turned up didn’t seem to know what they wanted.”
Now that the ministry has been given a special allocation, Chong feels that minister Datuk Seri Shahrizat Abdul Jalil should call for another meeting to fine-tune what is really important.
“The ministry should also select NGOs with the people’s interest at heart and work closely with them to achieve the PM’s goals,” says Chong.
Petaling Jaya resident Stanislaus Anthony, 61, was disappointed that the disabled did not get any increment for their present allowance of RM300.
“I was hoping that the PM would give all disabled Malaysians – whether blind, Deaf or in a wheelchair – a monthly allowance of RM500 across the board,” he says.
“It’s getting harder and harder to be a disabled person in Malaysia these days when employers don’t want to hire you because you are handicapped or you just can’t get out of the house because of the lack of public transport and accessibility,” Stanislaus laments.
“It is high time the authorities, whose job it is to help the handicapped, came down to our level to see what our problems are.
“As an individual who does his part to help other disabled people, I still have trouble getting wheelchairs for the poor.
“Just last week, a physically handicapped friend of mine was turned down financial aid because he had pay TV and a refrigerator.
“We still have hospitals like Universiti Malaya Medical Centre which treats you for free as an outpatient because of your disability card. But it ignores your card and charges you the sky if you get admitted. Many of the supposedly free medication for the disabled are often out of stock or not covered by the hospital.”
Stanislaus has been disabled since 1988. Now he uses a walking stick and a wheelchair because he has difficulty walking.
For Yam Tong Woo, 57, from Sungai Buloh, Selangor, who suddenly lost his sight two years ago following a bacterial infection, the recent Budget brought bitter-sweet news.
“The good news is the abolishment of sales tax on mobile phones and the waiver of import and sales tax on broadband equipment,” he writes via e-mail.
“The blind will be better able to use technology to help them find jobs and make new friends.
“However, many of the assistive and adaptive technology to help the blind get online are costly and out of reach unless the Government creates a subsidy for them.
“Broadband and telecommunications service-providers should be encouraged to reduce their costs to make their services affordable for blind Malaysians,” added Yam, a former automotive engineer.

Health concerns of older persons

2010-10-07T11:04:00.000+08:00

Thursday October 7, 2010

Health concerns of older persons

WHEEL POWER
By ANTHONY THANASAYAN

Not all symptoms can be attributed to old age and doing so can deprive loved ones of proper treatment.

THE world observed International Day for Older Persons last Friday. The United Nations-sponsored annual event is designed to bring attention to a global population of elderly persons who are rapidly increasing.

According to the UN, one-third of the world’s population will soon be over the age of 60. The majority of older persons live in developing countries.

Their population is expected to exceed 70% by the year 2030.

Against this background, Wheel Power spoke to consultant neurologist Dr Lim Shen-Yang of University Malaya Medical Centre, Kuala Lumpur, for his views on the type of neurological ailments that could affect the elderly in Malaysia.

“International Day for Older Persons offers us a chance to celebrate the fact that over the last half-century, the average lifespan of Malaysians has increased by about 20 years to 74 years of age,” pointed out Dr Lim.

“This is due to a multitude of factors: better sanitation, healthier lifestyles, and advances in (and improved access to) medical care,” he said, adding that people are living longer and leading productive and fulfilling lives.

“We are fortunate that deference for elders still remains a cornerstone of our culture. While ageing gracefully is a positive thing, one cannot get away from the fact that older people are at increased risk of developing health problems,” cautioned Dr Lim.

“Many of the physical and mental changes that occur with age are accepted as part of the process of ‘wear and tear’. However, it is a common mistake to attribute all symptoms occurring in older persons to old age. In so doing, we may be depriving ourselves or our loved ones of proper treatment.”

Dr Lim has authored numerous publications in medical journals and books, and is an associate editor of Neurology Asia. He cited an example where professional intervention is necessary. A careful evaluation of an older person with walking difficulties – and falls – may point to a neurological disorder.

These could include normal-pressure hydrocephalus (in which excessive fluid accumulates in the brain), cervical or lumbar spondylosis (where arthritic changes in the spine cause nerve impingement) and Parkinson’s disease (a movement disorder that frequently causes slowing of gait to the point of “freezing” or being “glued” to the floor).

Stroke, a condition where blood vessels in the brain become blocked, leading to the destruction of brain cells that are deprived of oxygen, can also be the problem.

“These conditions which become increasingly common with age, have specific treatments that can result in marked improvement,” said Dr Lim. “If left untreated, progressive or permanent disability may result.”

Dr Lim who is also a Parkinson’s disease and movement disorders specialist, was quick to point out that some of the neurological conditions can be successfully treated with medication to restore function.

“Walking difficulties should not be automatically viewed as an inevitable part of ageing,” he said. “Sometimes, there may be a treatable underlying disease.”

Other neurological conditions that become more frequent with increasing age include Alzheimer’s Disease, Lewy Body Dementia, neuropathic (nerve) pain, and motor neuron disease.

Although cures for these conditions are not yet in sight, certain symptoms, such as hallucinations or paranoid delusions (that commonly, for example, cause patients to constantly accuse other members of the household of stealing from them) can be effectively treated.

Dr Lim stressed that the important thing is not to ignore these problems as they cause distress to both the patient and caregiver.

“New cognitive enhancers can sometimes reduce behavioural disturbances, and improve memory and motivation,” he said.

“However, it should be noted that older patients can be more prone to experiencing adverse effects from medical interventions, so the pros and cons of initiating treatment need to be considered carefully, taking into account an individual’s overall situation.

“For example, whilst treatment of high blood pressure has been a major public health success in reducing strokes and heart attacks, over-aggressive treatment can sometimes lead to light-headedness and falls, a point of special relevance in some older patients who may already be frail to begin with.

“The often-complex nature of medical care of older patients underscores the importance of having a doctor who is knowledgeable and skilful, and willing to take the time to sort through the issues,” concluded Dr Lim.

Respect all life

2010-10-01T00:28:00.000+08:00

Thursday September 30, 2010

Respect all life

WHEEL POWER
By ANTHONY THANASAYAN

Group draws attention to the rights and welfare of animals under our care.
LAST week, a group of disabled folks from Selangor took a bold step to do something that had never been done before. They drew public attention to an important issue –the need for all Malaysians to respect and protect the rights and welfare of animals.
The issue arose after nine pedigree canines were put to sleep by the Kuala Langat District Council (MDKL) on Sept 19.
Fed up with the lackadaisical attitude towards the welfare of animals, the handicapped decided to do something about it.
They wanted to meet with the MDKL president personally to impress upon him why dogs are Man’s best friends.
They also wanted to stress that the MDKL should have made every effort to save and retrain the animals instead of putting them down.
A dozen people with varying types of disabilities packed themselves and their foldable wheelchairs into two special vans last Friday.
They started off from Rawang and took nearly two hours to reach MDKL’s headquarters.
It was one challenge after another for the team from the word “Go!”
The first obstacle was to get everyone to meet at one venue early in the morning.
A few of them had cars and motorcycles, and managed without too much difficulty. The rest had to hire taxis. Some of the taxi drivers made a fuss about having to put the foldable wheelchairs into the boot of their car.
Many had to wake up an hour or two earlier so they could be at the pick-up point on time. They had to feed their companion pets first before leaving.
Several of the parking lots reserved for the disabled at public restrooms along the way to MDKL were taken up by able-bodied drivers even though there were wheelchair signs at these parking space. As a result, they had to use parking lots meant for the able-bodied.
The situation was no better when they arrived at the MDKL. The only two car parks for the disabled were occupied by the council’s staff. The group had to wait until the staff moved their cars.
Inside the building, there were no disabled-friendly toilets. The visitors prayed that they would be able to sit through the event without having to use the toilet.
However, the group were pleased that they were able to meet the president.
They wasted no time in expressing their disappointment that authorities such as the Department of Veterinary Services was not involved in the removal of the dogs from an abandoned farm.
The veterinarians would have been in the best position to assess each animal and its behaviour.
Even if one or two were found to be aggressive, the DVS would have known how to sedate, remove and rehabilitate them later, before giving up all hope.
The group went to great lengths to explain to the council how each of the dead dogs, which included Rottweilers, Dalmatians and a boxer, could have easily found loving homes because they were pedigrees.
Former councillor for the Selayang municipality, Gurdip Kaur, a wheelchair user who has a pedigree service dog of her own, pointed out that with proper training, any one of the canines could have been successfully paired off with an elderly or handicapped person.
Francis Siva, who is paralysed from the neck down, said that Rottweilers were not “dangerous dogs” as mistakenly assumed by some people.
Serving as adviser to Petpositive, an animal-assisted therapy organisation for the disabled and the elderly, Francis said the breed was being used by several members of the society as therapy canines to help improve their quality of life.
“When dogs attack, it is almost always the owners who are to be blamed,” said Francis, who is also president of the Independent Living and Training Centre (ILTC) in Rawang.
ILTC committee member Hajjah Khairozy, who has a walking difficulty, related an amazing experience she had three years ago with a stray dog that saved her life.
The dog which was in front of her house started barking non-stop when her home suddenly caught fire. Even her neighbours had no idea what was going on until they were alerted by the canine’s barks.
After hearing all that they had to say, Francis said the council president conceded that they could have handled the situation better rather than culling the canines.
“He even promised us that there would not be a repeat of the incident,” he added.

Blindness is no barrier to golfing

2010-09-23T20:21:00.001+08:00

Thursday September 23, 2010

Blindness is no barrier to golfing

WHEEL POWER
By ANTHONY THANASAYAN

Blind golfing allows people with disabilities to lead an active lifestyle.

I FIRST met Yam Tong Woo, 57, about two years ago. That was about half a year after he suddenly became blind whilst working in China.

An infection caused him to lose his sight within a week. There was nothing the doctors could do to reverse his condition.

Despite his sudden disability, Yam learnt to accept his condition.

The former engineer has been actively helping other blind people.
During the recent Raya holidays, Yam was in Singapore for four days for the inaugural golf tournament called the Handa Singapore Classic.

Yam was one of three blind participants, the other two being an Australian and an Englishman. Their purpose was to raise awareness about blind golfing.

The first blind golf event in Asia was held in Japan 23 years ago by philanthropist Dr Haruhisa Handa, popularly known as the father of blind golf. He makes it a point to raise awareness about the special sport in all his sponsorship tournaments.

For Yam, the opportunity to participate with top golfers was beyond his wildest expectations.
“I never thought I would lose my sight completely,” said Yam, who had been playing golf for over 10 years before he was struck with blindness.

“When I became blind, I thought I would never set foot on a golf course again. Who would have imagined that I would get back to the golf course and tee off with some of the masters of the sport!”

Yam says that it was his family who encouraged him.

“My son and my wife offered to take me to the practice range.

“I was very self-conscious at first. I wondered what the sighted golfers would think about a blind man holding a golf club. I felt like a fool trying to hit a ball which I couldn’t see.

“Soon, people got used to the idea and some even came over to encourage me.”

Yam pointed out that he had to learn everything all over again, and the sport was even more challenging than when he had played it as a sighted person.

He had to get over the awkwardness of holding the golf club as well as hitting a ball that he couldn’t see, with the correct amount of strength.

His decisions and actions are all based on the detailed information provided by his wife who acts as his caddie and guide.

“The key to getting successful strikes is to always stay focused,” said Yam, who added that he was thankful to his family for pushing him back to his favourite sport.

At the Handa Singapore Classic, the professional sighted golfers played blindfolded.

The only thing that Yam worried about when he was teeing off was the buzz of an army of media personnel who had descended on the golf course. They were busy clicking away with their cameras.

“I felt the rush of excitement at being the only Asian to participate in the tournament. I remembered what I had to do – and that was to stay calm and focused,” said Yam.

“I visualised where the ball was, based on the details and instructions given by my caddie. After gauging the distance of the ball to the pin (the golf term for the hole in the green), I executed my shots.”

For more information on blind golfing, contact Yam (012-3053853 / e-mail yamtw05@gmail.com).

Sharing and caring

2010-09-16T16:52:00.000+08:00

Sharing and caring

WHEEL POWER
By ANTHONY THANASAYAN

Hari Raya open house is a wonderful way to celebrate the country’s cultural diversity.

OPEN house invitations to celebrate Aidilfitri proved to be an excellent opportunity for Malaysians to get to know each other better and rejoice in our cultural diversity.

Many of my friends took advantage of the holidays to go out with their families and friends to the many Hari Raya open houses around town. Others went by themselves.

Some Raya celebrants even offered transport for the disabled to attend their open houses.
At public events, the better prepared organisers made it a point to reserve disabled parking lots for handicapped drivers. They went so far as to meet the disabled at their cars and help them into their wheelchairs.

Effort was also made to ensure that the venues had disabled-friendly facilities in the restrooms as well as ramps into the building.

At the Selangor Mentri Besar’s do which I attended, the organisers provided special tables for disabled and elderly visitors. A waiter was on hand to help serve food to the special guests.

Well done to those who took the trouble to cater to special groups.

On another note, the nation’s 53rd birthday celebrations last month did not go down well with my friend Chong Tuck Meng from Bentong, Pahang.

This year was the first time the 49-year-old did not catch any live telecast of the parade from his home.
Chong has been using a wheelchair since a motor accident in 1982 left him paralysed from the neck down.
He recalled his very first Merdeka parade about 10 years ago in Kuala Lumpur.

He described it as one of his most memorable experiences, even though the crowd blocked his view and gave little consideration for his condition.

“Although our nation is now more than half a century old, there is still much to do in raising public awareness on the needs and rights of people with disabilities,” said Chong who serves as adviser for Perwira K9, an organisation for the physically disabled. “Whilst things are changing for the better for the disabled community in other countries, Malaysia has a lot of catching up to do in this area,” said Chong.

“Even in my hometown Bentong, I hardly see any changes for the disabled.”

Chong went on to say that he feels like a prisoner confined to his house. This is because the nearby shops and buildings are mostly inaccessible to wheelchairs.

“The Government, both at the local and Federal levels, should do everything in its power to correct these injustices so that people like me can lead a normal life.

“Because of the gross inaccessibility, the disabled community in Malaysia is among the most backward groups in society.”

“Remembering the disabled during festivities has its plus points as well as negative side,” cautioned Chong. “Festivities can inadvertently turn us into ‘victims’ of charity events, especially when they are over and we are forgotten for the rest of the year.

“People with disabilities should be remembered as often as possible and not only during special occasions.”
Chong also called for a change in mindset regarding the handicapped.

“TV programmes like the popular comedy drama series, Glee, and the blockbuster movie Avatar, feature characters with disabilities who carry a powerful message.

“When will our local TV shows and movies start portraying disabled characters positively? The only time we see disabled people now is during a tragedy, a disaster or in a tear-jerker.

We need to start viewing disability in a better light so that the rest of society will follow suit,” Chong concluded.

Unique Ramadan get-together

2010-09-09T16:14:00.001+08:00

Thursday September 9, 2010

Unique Ramadan get-together

Wheel Power
By ANTHONY THANASAYAN

CLOSE to a hundred people – most of them with disabilities – had a great time at a recent buka puasa dinner at PJ Hilton’s Crystal Ballroom.

This was the first Ramadan treat that was put together for members of the Malaysian Animal-Assisted Therapy for the Disabled and Elderly Association or Petpositive.

The event was sponsored by Gapurna Group Sdn Bhd, the developer of a commercial project called PJ Sentral Garden City in Section 52, Petaling Jaya.

Once completed, the project is expected to offer disabled and elderly-friendly facilities in its vicinity. It will serve as a benchmark for future developments to cater to the growing population of disabled and elderly citizens in the country.

The buka puasa event last Thursday was a big success for a number of reasons:

> Guests included people with all kinds of disabilities. Unlike other NGOs that focus only on one type of disability group, Petpositive targets people with all kinds of disabilities and includes the elderly, too.

Memorable do: Disabled guests and their families had a great time at a recent buka puasa dinner at PJ Hilton’s Crystal Ballroom.

The result was extraordinary. People with different forms of handicaps and their families were able to meet each other for the first time.

One parent of a learning disabled boy told me that the event was an eye-opener for her as she never realised there were so many handicapped people around.

“I don’t feel so alone now in my struggles,” she said. Some blind people were seen helping the physically handicapped by pushing their wheelchairs, while the latter helped the blind find their way to their tables.

The Deaf, who often live in a silent world, seem to be having a lively conversation, judging from the animated hand gestures.

> The focus was on the most deserving. Rather than extending invitations through NGOs, Petpositive decided to approach the disabled and the elderly directly. Most of the handicapped who turned up were those without jobs or an income.

A good number of them had never attended such a grand occasion before, hence the sea of beaming faces.

> Go Gapurna! Everyone had reason to be thankful: there were lots of scrumptious dishes, cakes and desserts. The organisers had also arranged for waiters to serve the guests at every table. This was really helpful, especially for those in wheelchairs and the blind.

Gapurna’s team and the hotel’s staff also chipped in by helping the guests to the ballroom. Gapurna’s Imran Salim went to all the tables to hand out Raya cookies to the guests.

All in all, the buka puasa event was an admirable effort to show extra kindness to the disadvantaged during this holy month of Ramadan.

Even the non-disabled patrons of the hotel had to put up with a little inconvenience as the wheelchairs jam-packed the lifts at the building.

But none of them seemed to mind. They gladly chose to use the stairs instead. Some of them even came up to us to say how inspired they were to see all of us come out together as a group to have a good time.

Thanks to Gapurna, for making it all possible.

Easier Access

2010-09-05T19:55:00.002+08:00

Thursday September 2, 2010

Easier access

WHEEL POWER
By ANTHONY THANASAYAN

Help the disabled to get on board the information super highway.
PRIME Minister Datuk Seri Najib Tun Abdul Razak has invited Malaysians to share their ideas for Budget 2011 which is scheduled to be tabled in Parliament next month.
This news was music to the ears for Yam Tong Woo. Yam used to work as an automotive engineer before he lost his sight in January 2008 following a bacterial infection.
“Fortunately, it wasn’t the end of the road for me, thanks to Internet technology,” said Yam, 52.
“I hope our Prime Minister will seriously consider opening the doors wide for the disabled community so that we, too, can access the information super highway that is revolutionising thousands of lives every day.
“It will take a special and well thought-out budget to make IT accessible to all disabled Malaysians.”

Enabled: A screen reader allows the visually impaired to read text that is displayed on the computer screen, with the help of a speech synthesiser.

Yam who now volunteers his time to help the blind access the Internet through assistive devices and software programmes, laments the fact that money is always an issue.
The blind, for example, are not able to use a computer without a screen reader which can cost as much as RM4,000. What the gizmo does is that it allows the computer to read everything out loud. “A full subsidy for the special software will make it affordable to the blind who have no choice but to purchase a screen reader if they wish to get online,” said Yam.
The other key players are Internet service providers and telcos, said Yam. He added that although some of them do offer discounts for handicapped subscribers, the packages being offered to the able-bodied are far more attractive. Discounts for disabled subscribers often come with unfair limitations which curb their Internet usage rather than encourage it.
Yam pointed out that service providers and telcos should look into their packages for subscribers with disabilities, and stop at nothing in offering them the best.
“Years ago, a number of disabled societies came together and requested a flat rate of RM5 for disabled subscribers of the telephone, cellphone and Internet,” Yam disclosed.
“But these suggestions fell on deaf ears. It’s time to revive the idea and give the disabled easy access to IT, just like anyone else.”
It is not difficult to see why Yam feels so passionately about IT and its benefits to the disabled community. When Yam lost his sight, he had no one to turn to for help. His only friend and guide was the computer. By surfing the Net, he learnt about the cause of his blindness. He was not able to get much information from his doctors earlier.
More importantly, he got to know many wonderful stories from the blind, and how they learnt to cope with their disabilities. The information and knowledge helped him – and scores of others like him – to become more independent and confident.
By getting online, the blind and others with disabilities will have more opportunities to find jobs, including work that can be done from the home. Even a mobile phone can help a blind person know where he is when stuck in the middle of the street. Instead of relying on others to give them directions, technology can provide the blind with the answers at the touch of a button.
And there’s no end to finding new friends and keeping in touch with them via e-mail, getting to know what’s happening in town, and in the world – the possibilities are endless.

Common neurological ills

2010-08-26T14:22:00.002+08:00

Thursday August 26, 2010

Common neurological ills

WHEEL POWER
By ANTHONY THANASAYAN

Most people still do not know what neurologists do.
CONSIDER these real-life situations. Case 1: A 26-year-old woman is admitted to hospital after experiencing seizures. She had episodes of loss of consciousness associated with limb-jerking movements. One side of her body became paralysed.
A brain scan revealed a blood clot in a major vein of her brain. Following blood-thinning medication, the clot cleared and her condition gradually improved and she was back to her normal self.
Case 2: A 35-year-old man suddenly developed a fever, followed by headache and stiffness of neck. He was confused and agitated by the time he was brought to hospital several hours later by his family.
The doctors wasted no time in getting him started on powerful antibiotics via an intravenous drip. A spinal tap confirmed that he had a bacterial infection of the brain. A right choice of antibiotics was selected and he recovered quickly.

Nobody is immune: As lifespans increase, age-related or degenerative conditions become increasingly common.

Case 3: A 48-year-old man with longstanding Parkinson’s disease finds it harder to move his “frozen body”. This is because each dose of medication only works for two hours, instead of providing day-long benefit as it did in the early years of his illness.
During these “off” periods, he is unable to walk because his feet are “glued” to the floor. When he needs to go to the toilet, he has to crawl to get there.
A surgery on his brain brought about marked improvement within months. It was such a success that he is now looking forward to being able to work again.
“Without prompt diagnosis and treatment, the first two patients would likely have suffered permanent brain damage, or even died,” says Dr Lim Shen-Yang, consultant neurologist at University Malaya Medical Centre.
Dr Lim points out that despite the critical role that neurologists play in the lives of people, most people still don’t know what they do.
“As neurologists, we face many challenges on a day-to-day basis,” he says and went on to explain what a neurologist is.
“We are doctors who specialise in diagnosing and treating disorders of the nervous system, which includes the brain, spinal cord, nerves, and muscles.
“Our job is to care for patients with neurological disorders that are treated primarily with medicines. Although there is obviously some overlap in what we do, this is in contrast to neurosurgery where neurosurgeons are specialists who perform surgeries for neurologic disorders like removal of brain tumours,” explains Dr Lim who has authored numerous publications in medical journals and books, and also serves as associate editor of Neurology Asia.
Dr Lim points out that neurological disorders are more common than what many people believe.
“People of all ages and backgrounds can be affected. Nobody is immune. As society becomes more affluent and lifespans increase, age-related or degenerative conditions such as dementia and Parkinson’s become increasingly common.”
In the first two cases cited above, Dr Lim points out that a good outcome was possible because of several reasons.
Firstly, the patients themselves or through the help of family members, sought appropriate medical consultation early. Secondly, the patients were given accurate diagnosis and immediate treatment.
“Had there been a significant delay in appropriate treatment – which sad to say is common today – permanent brain damage would likely have occurred.
“It is important for all of us to remember that the treatment options for a wide variety of neurological conditions have improved greatly over the last few decades,” Dr Lim added.
> For more information on today’s topic, Dr Lim can be reached at limshenyang@ymail.com.

Easy prey

2010-08-19T11:19:00.000+08:00

Thursday August 19, 2010

Easy prey

WHEEL POWER
By ANTHONY THANASAYAN

Disabled victims must be given priority at all times.

I CAME across an interesting issue that was highlighted in the newspapers recently. The Chief Justice of Malaysia Tun Zaki Azmi pointed out that criminal cases involving direct victims should be given priority in the courts.

Zaki was referring to cases like rape, incest, snatch theft and robbery, and said they should be given priority over other cases like possession and consumption of drugs, for example.

He also pointed out that a particular rape trial in a northern state had been postponed 52 times!
I hope the Chief Justice will include people with disabilities (PWDs) and the elderly in his priority list should they become victims of crime.

Their physical conditions make them easy prey.

I have heard horrifying stories of how the blind fall victim to snatch thieves in broad daylight. Most members of the public do not even realise that a crime is taking place until the assailants have escaped.
Snatch thieves have found a novel way to make a fast buck. They approach the blind – mostly women – who are trying to cross the street and offer help.

While assisting them halfway across the road, they take off with their victim’s belongings. This endangers the lives of the blind, who are left stranded in the middle of the road. Their cries for help are often drowned out by the noise of the traffic.

The vulnerability of disabled victims and the trauma they experience is greater than that of the non-disabled.
It is a myth to assume that the average crook sympathises with those in wheelchairs.

A disabled person is more likely to be viewed as easy target by snatch thieves, especially when they are in a lonely spot in their wheelchairs or driving alone in their cars which bear a wheelchair-sticker.

Violence in the home is another real problem, although many cases often go unreported. This is largely due to another myth that all families are caring to their disabled members.

Once again PWDs and the elderly, especially women, are more vulnerable in cases involving domestic violence.

I came across a couple of such stories last week. One involved an elderly disabled woman who was hit by her able-bodied son. The other, a disabled woman, was hit by her brother who was supposed to be her caregiver.

Being in a wheelchair makes it almost impossible for someone to defend himself or herself. A blow to the body can do much harm due to the individual’s frailty or inability to fend off the attack.

It is important that police officers involved in helping such victims be trained in handling people with disabilities. They must have a general understanding of the handicapping conditions and the vulnerability of the disabled in crisis situations.

Disabled victims must be given priority at all times. More so in cases of domestic violence when the victim is living alone with a “caregiver” who is a family member.

In one particular case, the police had a tough time believing that the disabled person was abused by the caregiver even though the facts were quite clear.

Government servants, NGOs and even politicians who make it their job to help people in crisis, should also be trained in handling PWDs.

Officers who are involved in helping such people, should invite organisations for the disabled for discussions on how the former can best help the latter.

Local courts and police stations should do the needful to make their buildings disabled-friendly.

These include providing at least two disabled parking lots right at the entrance of their buildings and making their restrooms disabled-friendly. There must be clear signage and the guards at the guardhouse should be instructed on how to offer assistance to the handicapped.

We all know that making police reports can often take a few hours to complete. Not having a disabled-friendly toilet in the police station will put the victim in an even more difficult position.

The disabled and the elderly must be attended to as soon as they enter a police station.

There is really not much point in putting up posters of a friendly police station – as is done nowadays – when the buildings tell another story.

Well done!

2010-08-12T11:35:00.000+08:00

Dogathon 2010 makes it to the record book

Wheel Power
By ANTHONY THANASAYAN

UPM’s Dogathon 2010 brought cheer all around.

MY chums and I had a terrific time last Sunday.

We were at Universiti Putra Malaysia (UPM) in Serdang, Selangor, to take part in what was expected to be the largest gathering of canines in the country.

Called Dogathon 2010, the event was organised by students of UPM’s veterinary faculty with the support of their lecturers.

They were hoping to draw as many as 800 dogs this year and outdo their last score of 600 canines in 2008. That record managed to sail comfortably into the Malaysia Book Of Records.

Last Sunday’s turnout was even more astounding. An incredible 1,100 canines turned up, accompanied by nearly five times that number of animal-loving owners.

Armed with walking sticks, a white cane and half a dozen wheelchairs, we made our way through a maze of tail-wagging participants. One or two tiny dogs jumped out of our way and into the arms of their owners, but the rest of the canines were not too bothered by our wheelchairs. Many seemed more interested in checking out the pretty pooches that were there.

Those that walked directly to us were the larger breed canines. Several golden retrievers (a breed reputed to be excellent assistance dogs for the disabled) literally pulled their owners towards our wheelchairs.

One lady whose dog bumped into me confessed that she had never spoken to someone in a wheelchair before. She said she had many misconceptions about people in wheelchairs until after our chat – thanks to her dog!

My wheelchair, of course, was a hot item for many of the dogs. That’s because unknown to their owners, it carries the scent of four of my trusty four-footed companions back home.

A 45-year-old first-time visitor who experiences a total freeze over his body several times a day because of Parkinson’s disease, said he felt like jumping for joy after seeing so many dogs in one place.

“The morning encounter helped me to put aside my struggles with Parkinson’s for over 10 years, and think positively about the future,” he said.

Another young man in a wheelchair, S. Sekar, who became paralysed following a motorcycle accident five years ago, made it a point to play with as many canines as possible.

“I managed to touch only 30 dogs,” he said, sounding rather disappointed. “Many pet owners were surprised when I asked them if I could touch their pets but they were obliging, Some even carried their dogs and placed them on my lap so that I could take a picture with my mobile phone,” he beamed.

One blind gentleman had the opportunity to meet several furry visitors who came up to him when he was sitting in the animal-assisted therapy stall put up by Petpositive, a national society to encourage the disabled and elderly to have pets.

He told us inspiring stories of how his three canines helped him cope when he suddenly lost his sight two years ago. “In a world of complete darkness, it’s a great encouragement to have seeing-eye dogs by your side,” he explained.

Special arrangements were made for the disabled and the elderly to participate at the Dogathon. Car parks were reserved for the disabled and a portable disabled-friendly toilet was available.

This is the third time that UPM has actively involved the disabled community in its dogathons. For me, it was marvellous to see the disabled at a major dog event. I have never witnessed any canine event in which so much effort was made to accommodate the disabled.

I’m sure that if all the 1,100 dogs were reading this now, they would give a loud woof in support of the way the UPM folk treated the disabled and the elderly that day.

Note: Pictures courtesy of Alison-Ghani Murugesu

Virtual Lifeline

2010-08-05T22:10:00.002+08:00

Thursday August 5, 2010

Virtual lifeline

Wheel power
By Anthony Thanasayan

The Internet can open up a whole new world for the blind.
A SPECIAL symposium will be held in Kuala Lumpur this Saturday. It will be attended by nearly a hundred participants, more than half of whom have visual impairments. They include people with partial vision, low vision, the elderly with failing eyesight, and the blind.
The rest are sighted individuals. About 40 of them are students from the Multimedia University in Cyberjaya.
Called the “Assistive And Adaptive Technologies Symposium”, it is organised by the Cyber Club of the Malaysian Association for the Blind (MAB) in Kuala Lumpur.
The symposium is the brainchild of Yam Tong Woo, 57, who serves as volunteer chairman of MAB’s Cyber Club which was set up three years ago. The aim of the club is to help the blind get on the information technology superhighway to raise their quality of life.
Yam pointed out that one of the best ways to get the blind on the Internet is to bring them together to share how their lives have improved since they went online.
“Our symposium will showcase some of the latest technologies and software which are user-friendly to the blind and those with poor vision,” explained Yam who is blind.
“We won’t be concentrating on computers alone; we will also focus on hand-held gadgets, including the latest technology from mobile phone companies.”
“The role of communication technology and IT can never be overemphasised when it comes to the disabled community, particularly the blind. It’s a lifeline for us,” Yam said.
Yam, who lost his eyesight two years ago, recalled how difficult it was for him and his family to find support then.
Through the Internet, Yam came across amazing stories about blind people around the world and their experiences. He felt empowered.
“Today the Internet has become a major part of my life. It has helped me do things like re-learn to play the guitar from YouTube,” Yam laughed.
Yam strongly believes that IT can greatly enhance the lives of the blind.
“The blind can go anywhere in cyberspace and retrieve any information they want instead of depending on the radio or Braille recordings of magazines or books.
“The Internet can open up a whole new world for the blind. They need not limit themselves to being masseurs and telephone operators. It all depends on the entrepreneurship and creativity of the individuals,” said Yam.
“The latest phone technology with a built-in screen reader is a boon for the blind. It enables them to receive and send out messages.
“Local telcos and service providers can do more by giving better discounts to make ICT affordable to all disabled persons. Perhaps a flat rate of RM5 for all services could be given to subscribers with disabilities,” said Yam.
The symposium on Saturday will be held from 9am to 4pm at the MAB office in Kuala Lumpur.
For details call Yam at 012-3053853 (e-mail yamtw05@gmail).

A Brighter Future

2010-07-29T18:51:00.002+08:00

Thursday July 29, 2010

A brighter future

Wheel Power by ANTHONY THANASAYAN

You, too, can win the war against Parkinson’s.
I WAS in the company of nearly a hundred gifted people last Saturday. There were another 100 caregivers and supporters of my special friends.
We were all at the Petaling Jaya Community Library celebrating World Parkinson’s Day (WPD). Even though the actual day falls on April 11 every year, the organiser of the event which was the Petaling Jaya City Council (MBPJ), decided to go ahead with the celebration for people with Parkinson’s (PwP).
This showed the commitment of the council to the cause of PwPs. Last year, MBPJ celebrated WPD outdoors. It was held in the garden of its headquarters in Petaling Jaya with a drum therapy session and exercises for PwPs.
This time round, MBPJ took a more serious approach towards this disease of the nervous system that progresses over time and causes the muscles to become weak and the limbs to tremble.

We shall overcome: Participants at the MBPJ World Parkinson’s Day celebration at the PJ Community Library on July 24.

Two of the country’s leading specialists on Parkinson’s disease (PD) in Kuala Lumpur, Assoc Prof Dr Norlinah Mohamed Ibrahim and Dr Lim Shen-Yang, were invited to present their expert opinions on the subject.
They also volunteered their services as consultants and medical advisers to the Malaysian Parkinson’s Disease Association (MPDA) in Kuala Lumpur. The association was a co-partner in putting together the event.
Dr Norlinah who is head of the neurology unit at Universiti Kebangsaan Malaysia Medical Centre in Cheras, Kuala Lumpur, presented a talk on Parkinson’s and covered the latest treatments and available drugs in the market.
Dr Norlinah uncovered some sobering facts about Parkinson’s. She pointed out that it affects more people – including younger folk – than most of us care to think.
She revealed that Parkinson’s was the second most common neuro-degenerative disorder and that the numbers are expected to double in the next 25 years, affecting those who are 50 years and above.
Dr Lim who is consultant neurologist at the University Malaya Medical Centre, KL, focused on the neuro-psychiatric aspects of Parkinson’s. He touched on the struggles that PwPs had to go through, from depression to dementia and even hypersexual behaviour caused by certain drugs taken by patients.
Dr Lim pointed out that psychosis and dementia are the major reasons why PwPs often have to be cared for in nursing homes.
Some medication given by psychiatrists may unknowingly worsen a condition called “Parkinsonism”.
“In many instances the care of patients with Parkinson’s is complex and patients deserve to be cared for by people (doctors, allied health professionals, etc) with a specific interest in this disorder,” said Dr Lim.
“This right is embodied in the Global Declaration on Parkinson’s which was recently endorsed in Malaysia by numerous signatories, including the Health Minister,” he added.
Apart from the talks, there was also a laughter therapy segment that helped all of us to loosen up.
I was invited to give a speech earlier on at the event. “Although I don’t have PD, I am sitting in a wheelchair like many of you,” I said. “Through my disability I can understand how you all feel, being in a situation where you can’t get your limbs to do what you want.”
“Thank you for all the wonderful stories of courage that you have given me to share with the readers of Wheel Power.”
I concluded with a quote from actor Michael J. Fox who has Parkinson’s: “The war against Parkinson’s is winnable. And you can play a part in its victory.”
For more information about PD, contact the MPDA ( 03-7980 6685) or go to www.mpda.org.my.

Access To All Areas

2010-07-22T21:09:00.000+08:00

Thursday July 22, 2010

Access to all areas

Wheel power
By Anthony Thanasayan

All out to create a barrier-free PJ.

TO those of you who may not be in the know, I have good news to share with you.

I’m absolutely delighted to be sworn in as councillor of Petaling Jaya (MBPJ) last Thursday. This will be my third stint as councillor. My term, like all my fellow councillors in PJ and Selangor, will end on Dec 31 next year.

I sit in the monthly council meetings for health, infrastructure and sustainable development. For health, we cover a wide range of issues from checking and taking action on dirty eateries, environmental hazards to the control of rats to avoid the spread of diseases.

We offer free treatment to the disabled and the hardcore poor at MBPJ’s clinic. Plans are also in the pipeline to install a disabled-friendly loo there.

Recently we re-launched MBPJ’s two disabled-friendly vans in the poorest areas of PJ so that those who need them the most would know about the service and use them. The vans are available free-of-charge.
However, we are not stopping there. For the next one-and-a-half years, we will be knocking on the doors of the homes of the poor in PJ to check whether there are disabled and elderly persons who might need help from the council.

In a recent exercise, we came across several elderly folk who were bedridden and in need of help following a heart attack, or complications from diabetes or some other ailments.

They had no wheelchairs so they remained in bed all the time. They couldn’t even go out to the balcony of their low-cost flat for some fresh air. They had little or no help at home because their children were busy working to make ends meet.

One or two of them had wheelchairs that could not fit in the toilet as it was too small. The toilets did not have proper grab bars, too.

For these people, MBPJ has decided to set up a special fund to provide free renovations.

We are also inviting sponsors to come in as part of their corporate social responsibility to assist deserving people like these to raise their quality of life.

This initiative was started by Haniza Talha, the state assemblywoman for Taman Medan, together with the planning department of MBPJ headed by its director Sharipah Marhaini.

In the infrastructure committee, efforts are under way to incorporate disabled-friendly features in all the pavements that are being upgraded. Residents with disabilities and the elderly in PJS 5 and 6, and some parts of PJ Old Town are already witnessing the changes from right outside the windows of their homes.

The yellow tactile markings on pavements (for the blind) and ramps with gentle gradients for wheelchairs are opening up doors for the disabled community so that they can interact with the rest of the non-disabled residents.

It will be easier now for them to find jobs, get married and even raise a family and live on their own without having to depend on anybody.

We are checking on homes for the elderly and the disabled to ensure that the residents get the facilities that they require from the operators.

We make sure that none of them are short-changed: toilets must be designed with enough space for manoeuvring a wheelchair, grab bars must be provided and steps levelled before approvals are given.

Those who do not provide such facilities are called in. We explain to them in detail why such steps are necessary.

There are so many other things that MBPJ is doing to create a barrier-free PJ for everyone.
The Planning Department recently came out with a striking drawing (pic) depicting the real people of Petaling Jaya.

What is different about the artwork is that it included images of people with special needs. There is an able-bodied mother with her two children, an elderly man with his walking stick, and a father pushing his child in a pram, alongside his pregnant wife.

There is also someone wheeling his disabled loved one in a wheelchair, whilst a blind man is being led by his guide dog.

I believe that we are all beginning to see the bigger picture now.

Meaningful match

2010-07-15T11:31:00.000+08:00

Thursday July 15, 2010

Meaningful match

WHEEL POWER
By ANTHONY THANASAYAN

THE FIFA World Cup 2010 may have ended but soccer fans will continue to re-live some of the exciting moments of non-stop action from South Africa.

Yam Tong Woo, like most football fans I know, found the blowing of the vuvuzelas extremely annoying.
“It was so loud and sounded like the incessant humming of bees. It drowned out the sound of the soccer ball being kicked during the matches,” lamented the 56-year-old former automotive engineer who lives in Sungai Buloh, Selangor.

The sound of each kick was all the more important for Yam to savour the game because he is blind.
Two years ago, when Yam was in Kunming, China, for a job assignment, he developed a fever and suffered diarrhoea due to food poisoning. Within a week, he had completely lost sight in both eyes.
Yam bounced back within a year of his illness to become chairman of a cyber club for the blind at the Malaysian Association of the Blind in Brickfields, Kuala Lumpur.

Yam now helps other blind people to familiarise themselves with the Internet and communication technology.
At the previous World Cup four years ago, Yam “watched” the action in Malaysia whilst his eldest son watched it live in Germany where it was held.

This time round, however, father and son watched it together at their home in Sungai Buloh.
“My boy would commentate each match for me as we watched the games,” said Yam, who is married to Ooi Phak Hong. The couple have three grown children.

“I think my blindness has brought us all closer together,” said Yam.

Chong Tuck Meng, 49, from Bentong, Pahang, also found the World Cup season a welcome diversion.
Paralysed from the neck down due to a motorcycle accident nearly 30 years ago, one of Chong’s daily challenges now is to make sure that he doesn’t develop pressure sores on his buttocks from the prolonged sitting in his wheelchair.

“Thanks to FIFA 2010, I’ve found the perfect excuse to lie in bed (to watch my favourite teams battle it out), which takes the pressure off my back,” he said.

“Soccer has helped the disabled put their worries on hold for a while and enjoy life.”

This, ironically, coming from someone who as a teenager was actually thrilled when he broke his leg during sports so that he could stay home and enjoy the World Cup.

For Chong and Yam, who were both rooting for a victory for the Netherlands, take heart, guys. With football, there will always be another day!

Toilet tales

2010-07-08T13:52:00.003+08:00

Thursday July 8, 2010

Toilet tales

WHEEL POWER
By ANTHONY THANASAYAN

There is still an appalling lack of facilities for the disabled in buildings frequented by them.
RECENTLY a group of us came together to attempt the unimaginable – a spot check of public toilets in town! We all know the nightmarish encounters such a task would entail. Unflushed toilets, broken or missing taps and toilet seats, tissues that are nowhere in sight – you get the picture.
Fortunately there was a twist to our mission. We were to only look out for disabled-friendly loos. Our target: some of the most important government buildings in the Klang Valley that members of the public frequent.
Journalist Priya Menon, photographer Munirah Muzamer, wheelchair-user Francis Siva and I headed to our destinations.
Francis and I made a good combination; he was paralysed from the neck down, and I, from the waist down.

A long way down: Francis Siva at the top of the stairs leading to the toilets and pool area of the Kelana Jaya Swimming Pool.

Our feedback would make the exercise more comprehensive as it would include our specific needs.
As council members of MBPJ’s disability technical committee, our first stop was naturally the PJ Civic Centre. Needless to say, the architects who designed this landmark building had obviously never dreamt that disabled and elderly people would be using it.
Although a ramp was constructed outside and inside the building some years later, no attention was given to the restroom even though wider cubicles that can squeeze in wheelchairs are available at the men’s and women’s section.
To access the restrooms, however, one had to contend with a step until recently, when a ramp was built. But sad to say, the ramp is too steep to be of any help.
The good news, however, is that MBPJ is planning some major renovations to make the Civic Centre more user-friendly.
One of the best spots in the auditorium where performances are held has been reserved so that at least two wheelchairs can be parked there.
Our second stop at the Kelana Jaya Swimming Pool was most frustrating as wheelchairs had to be carried up and down a flight of steps to get to the pool area. Once inside, there were more steps to the changing rooms and toilets.
I was told that a few disabled swimming championships have been held at this very pool. Makeshift ramps and other alternatives were included to facilitate wheelchair-using athletes.
It is high time MBPJ took up the challenge to overcome the various obstacles in the building and incorporate permanent structures so that disabled members of the public can use the pool without difficulty.
For those who are unfamiliar, people who are paralysed in their legs can still swim with their hands. It is an excellent exercise which is also very therapeutic.
At the National Registration and Immigration offices in Pusat Bandar Damansara, we were shocked that no handicapped toilets could be found. The only one that was accessible was several blocks away. It was too far for us to even try to get there.
An even bigger horror awaited us at the KL Social Welfare Department which was located on the ninth floor of the Grand Seasons Avenue in Jalan Pahang.
This is the one place people in wheelchairs and the elderly go to get aid from the Government.
We couldn’t believe our eyes when we came across the toilets for disabled men and women in the separate sections. Shower curtains were used as doors. Any disabled person using this toilet would find himself or herself exposed to others in the restroom. There was hardly any room to manoeuvre a wheelchair and there were no grab bars in sight.
Here was an institution that was supposed to care for the disabled and look into their needs. Yet, they have no qualms about allowing such a situation to go on for years.
When asked, the authorities replied that they could not do anything about it as the building did not belong to them.
However, as soon as I reached home, I received a piece of good news on the phone from the top management of the building.
They had learnt of our visit to their premises and informed me that a proper toilet would be built for the disabled at the men’s and women’s section.
The toilets should be ready by this week.

Wheelchair-friendly PJ

2010-07-01T14:42:00.000+08:00

Thursday July 1, 2010

Wheelchair-friendly PJ

Wheel Power
By ANTHONY THANASAYAN

A new world opens up for the disabled.
THIS is it, folks: the end of the road for me as councillor of Petaling Jaya (MBPJ). I have been told that the positions of all local councillors in the state will cease to exist next Tuesday.

A new list of councillors, comprising old and new faces, will be sworn in on Wednesday. And they will carry out their duties for the next 12 months.

At the time of writing this article, I do not know if I will be in or out of that list.

All I can tell you is that the experience of serving the people of Petaling Jaya in Selangor has been a challenging task for me.

It was exactly on this day today, two years ago, when the council’s wheelchair-friendly van arrived at my home to take me to the swearing-in ceremony. I recall even pinching myself several times during the journey to convince myself that it was not a dream.

There was good reason for my cynicism.

Here was a local council that I had serious issues with for nearly all of my life. It had virtually ignored all of my special needs as a boy in a wheelchair.

I was forced to stay indoors because the city – which was a town then – had totally disregarded my basic needs in its infrastructure.

As a result, I couldn’t go to school, or play with my friends in the neighbourhood. I couldn’t even visit the park that was only a stone’s throw away from my house because the PJ town council obviously thought that someone like me didn’t exist. Or worse, wasn’t worth the effort.

(Unfortunately that is still the sad state of affairs with many of the other local councils, not only in Selangor, but across the nation).

The pavements were too high for my wheelchair, the park’s entrances were too narrow, and the toilets were inaccessible.

Today, PJ is a lot more wheelchair-friendly. The park near my house now has an entrance that is accessible to wheelchairs and prams.

There is a clever design in the shape of a U-turn that keeps out motorcycles.

Another notable improvement was the universal-designed pavement of about 500m along Jalan Gasing.
Such projects opened the floodgates for a special group of people who have been marginalised by society in the way we plan our towns and cities.

Elderly residents aided by their caregivers are now able to access the park in their wheelchairs and walking sticks for some exercise and fresh air.

Mothers with prams, the blind and even children can now walk safely to the nearby shops, a church, a temple and a public park that the special pavement covers.

Some people (who weren’t elderly or disabled) complained that it was a waste of money and effort. The changes in the park also drew a similar reaction.

They obviously were not aware of the increasing number of disabled people in the country. They failed to see that in the next generation, there will be more senior citizens than children, and that our nation would have an aging population.

Disability would be a key consideration among this elderly group.

So now is the opportune time to start building a city in anticipation of the needs of an aging population.
Recently, the MBPJ Planning Department undertook a commendable task.

They decided to go to the homes of the disabled and the elderly in the poorest parts of PJ, to offer them assistance.

In the middle of next month, a special team will be knocking on the doors of these homes to see in what area they need help.

They will be given assistance to register with the relevant bodies at the local and federal levels for financial aid. Those requiring medical treatment will also get the assistance they need.

For the bedridden, wheelchairs will be provided. Renovations to their toilets will be done at MBPJ’s expense to make them disabled-friendly.

Show Support

2010-06-24T16:42:00.000+08:00

Thursday June 24, 2010

Show support

WHEEL POWER
By ANTHONY THANASAYAN

Parkinson’s patients need all the encouragement they can get.
AS a schoolboy, Lock Kuan Hun used to help his two blind friends in class. They would sit next to him and ask him to read out what the teacher wrote on the blackboard. Lock spent recess time reading textbooks aloud to them. He considered it a privilege to serve others.
Lock, who will be celebrating his 61st birthday next month, still remembers his two friends with fondness. “If anyone had told me then that I, too, would become disabled, I would have told them to buzz off,” confessed the retired assistant engineer who has Parkinson’s Disease (PD).
PD is a condition of the nervous system which causes the muscles to become stiff and the body to shake.
“When I noticed that something was different with my body, I thought it was nothing to worry about,” said Lock.
It started 10 years ago when Lock noticed that his left finger would suddenly start trembling on its own, and then stop. “I had no control over what was happening,” he added.
It was only two years later that his condition was diagnosed. “A visit to the family doctor, for my cough and flu, changed everything. The doctor spotted my dancing finger and sent me immediately to a neurologist.
“I had the shock of my life when the neurologist confirmed my condition. I had heard of PD but never thought it could happen to me.”
What Lock liked most about the doctor was that he gave him hope. And plenty of it!
“The doctor assured me that PD was not a death sentence. The symptoms are highly treatable with new medications that always appear in the market. There’s also a very strong possibility that a cure for the disease could be found soon.”
What Lock appreciates most about the specialist is that he gave his patients lots of reasons to be optimistic despite the prognosis of the disease.
That has enabled Lock and his wife of 35 years, to stay on top of the situation. The couple have two children in their twenties.
To stay positive, Lock and his family take part in as many activities as possible. Lock received a new computer monitor as a gift from the family for Father’s Day.
He now looks forward to spending more time surfing the Internet for information on PD. Lock serves as a committee member at the Malaysian Parkinson’s Disease Association. He conducts Wai Dan Gung classes for members at the Parkinson’s centre in Old Klang Road. The centre offers PD patients a place to meet fellow patients and gain encouragement from them.
Lock also sings to loosen his vocal cords. His dogs, which are very obedient to him, provide him with a much-needed sense of control to fight PD.
For more information on Parkinson’s Disease, call the Malaysian Parkinson’s Disease Association at 03-7980 6685.

Joyous News!

2010-06-17T15:48:00.002+08:00

Thursday June 17, 2010

Joyous news

WHEEL POWER
By ANTHONY THANASAYAN

LAST Saturday, MBPJ launched its “Facilities for the Urban Poor Programme” targeted at the poor, disabled, and elderly.
The event was held at a popular market next to the Jumhuriyah mosque in Taman Dato Harun. The VIP for the day, Taman Medan assemblyman Haniza Mohd Talha, arrived long before the people did.
About 150 people turned up. Talking to some of them later, I found out how excited they were about the special project. The disabled and the elderly were thrilled to learn about MBPJ’s wheelchair-friendly vans. They had no idea that the vehicles existed or that the handicapped could request for them free-of-charge.
“Thank God I don’t need to put up with cabbies who always complain when I have to take my invalid mother to the hospital,” said a female resident. “Cabbies not only make a fuss about wheelchairs but they also refuse to help me put it in the booth,” she explained, adding that with the special van and its hydraulic lift, her mother could easily be lifted into the vehicle without any problem.
I was reminded of the time I visited a 70-year-old man in a low-cost flat some weeks ago. A heart operation had left him semi-paralysed. He lay in bed all day while his elderly wife sold titbits outside their flat to make ends meet. He had trouble going to the toilet which was not designed for the handicapped. He had no wheelchair even though he had approached various charities for help.
I met another elderly woman with a similar predicament. A diabetic, she was unable to walk because of the wounds on her heels.

Fortunately for me, my fellow councillor Tang Fuie Koh offered to donate wheelchairs to the senior citizens.The wheelchairs were rushed to them. The reception we got when we arrived at their homes was heart-warming.
The elderly gentleman dropped what he was doing and got into the wheelchair. He was so excited and smiled non-stop.
The elderly lady was so happy that she burst into tears of joy. I heard later that she got out of her tiny apartment every now and then to enjoy some sun and fresh air.
Even though we received the sad news of her passing recently, we will never forget how a wheelchair made her last days so joyous. We realised how a simple act of kindness can make a big difference in someone’s life.
One of MBPJ’s projects is to fix the bathrooms of disabled and elderly persons, for free, if they are not wheelchair-friendly.

The day ended with the MBPJ team headed by Puan Sharipah Marhaini, head of planning, making a quick visit to the mosque next door.
We were pleased to find proper ramps in the building. However, there were no disabled-friendly toilets. We decided to install one each for the ladies and the gentlemen so that they can fulfil their religious obligations in greater comfort. We also identified a suitable parking spot for the handicapped. This will be constructed with an overhead shelter to protect users from the harsh elements.
Indeed, there were plenty of reasons that day for everyone to beam from ear to ear. From the looks of it, they will keep on smiling as the local council continues to push forward in its new vision for Petaling Jaya

(Note: Pictures courtesy of the office of Taman Medan assemblyman YB Haniza Talha)

Pet Project

2010-06-10T11:57:00.002+08:00

Thursday June 10, 2010

Pet project

WHEEL POWER
By ANTHONY THANASAYAN

Pets can do wonders for the disabled and elderly.
PETPOSITIVE, the non-governmental organisation in which I serve as president, turned four on Monday.
Looking back, it has been an incredible learning experience for all of us.

The power of love: The therapeutic role of pets has gained increasing attention.

Our aim is to partner pets with disabled and elderly persons for positive living.
The idea was based on my relationship with my dogs. Despite being an activist on disability, I found it hard to fight off bouts of depression from time to time.
The day I got my first pup – a black and rust-coloured Rottweiler named Vai – put an end to my negative thoughts. Vai “took over” my life completely when he insisted that I take care of him and played with him every day. He refused to take my wheelchair as an excuse.
Another remarkable pup, an Alsatian by the name of Biman II, came a month later, leaving me no time to feel sorry for myself.
The two canines have since died. However, their memories and special mission live on today in Petpositive.
When Petpositive was formed, we decided to expand our work by introducing a variety of animals, besides canines.
We started to work with cats, birds, rabbits and even reptiles like lizards and non-venomous snakes. The results were remarkable.
Six months after our society was registered as an NGO, we started a project with a young woman whom doctors assumed would be a vegetable for the rest of her life.
However, introducing her to aquarium therapy changed all that. Our volunteers visited her home and set up an aquarium full of parrot fish.
For the first time in the young woman’s life, she had something that she could call her own. She would spend hours gazing into the aquarium and watching the fishes swim from one end to the other, instead of staring at the ceiling and fan every day as she used to.
She would light up whenever her adoptive mother talked about her underwater friends.
According to her mother, there was a marked improvement in her cognitive skills since the aquarium was installed in her home.
Whilst Petpositive’s primary focus is on animal-assisted therapy, we also work with disabled and elderly persons who have no pets of their own.
There are no fees to become a member of our society. Anyone who is disabled or elderly is automatically a member. In this way, our society is able to reach out to everyone who requires our services.
In 2008, we set up Petpositive Therapy Centre in Petaling Jaya, a place where the disabled and elderly can come with their animal companions for assistance.
We are delighted that we will be getting a new van soon, courtesy of CIMB Foundation. Aptly called “Petmobil”, the van will be used to bring the disabled and elderly to our centre. It will also enable us to go to the homes of those who are bedridden and offer our services to them.
As with any NGO with a mission, there are obstacles in our way. We are looking for a male driver-cum-office worker, as well as a 24-hour male caregiver.
They must love animals and be patient and understanding with the disabled and elderly, to work with us. The ideal age: around 25.
We are also looking for donors to sponsor their salaries and help meet the monthly rental of our therapy centre.
For more details about Petpositive, call 012-220 3146 or visit www.petpositive.com.my.
You may also visit our blog at www.petpositive.blogspot.com or contact us on Facebook at Petpositive Empowerment.

Chance to shine

2010-06-03T21:05:00.000+08:00

Thursday June 3, 2010

Chance to shine

WHEEL POWER
By ANTHONY THANASAYAN

Disabled athletes score at paralympic carnival.
MY job as councillor of Petaling Jaya often takes me to a number of events in and outside the city. Sometimes I am asked to officiate an event. Most of them are usually very interesting.
However, none were quite as extraordinary as the one I attended on a recent Sunday afternoon. I’m referring, of course, to MBPJ’s Paralympic Carnival that was held over three days.
The event, jointly organised by the Malaysian Paralympic Council, saw as many as 225 disabled athletes from around the country taking part in seven sports events. They included swimming, weight-lifting and chess.
The athletes were made up of the physically disabled, persons with learning disabilities, the Deaf and others with multiple handicaps.
The highlight of the event was a special sport called Boccia. It was featured for the first time in a Malaysian open championship. Boccia is a target sport that tests an individual’s muscle control and accuracy. It requires a high level of focus and concentration that builds on the participant’s tactical awareness skills.
It is ideal for people with disabilities which affect their movements. These include persons with cerebral palsy, muscular dystrophy or neurological conditions that often require the use of a wheelchair.
I was most impressed by this sports form that got recognition for the first time at the Paralympic Games in New York in 1984.
Today, Boccia is one of the fastest growing international and paralympic sporting events in over 50 countries around the world.
Governed by the International Boccia Commission in Germany, the aim of the game is to throw leather balls as close as possible to a target called the “jack”.
The balls can be thrown with one’s hands or feet. Participants who do not have the strength or the ability to throw the ball can use a specially-made device which looks like a slide ramp in a seesaw.
At the paralympic carnival, able-bodied helpers passed the balls to the participants who took careful aim at their target. They then let the ball roll down the device straight to the jack.
Although the game was slow, the disabled competitors in wheelchairs took it seriously.
What I like about Boccia is that it allows people with greater levels of disabilities to take part in sports. At the event I met two friends whom I had lost contact with for years.
I was glad to see that despite their profound disabilities, they had become avid sportswomen.
Although they were not able to talk clearly like many of us and possess limbs that seem to freeze ever so often, their sweaty, glowing faces said it all.
And what an honour it was for me to be able to put the medals on the prize-winners, who were wheeled towards me by their able-bodied helpers.
It took some on-the-spot coordinating of wheelchair positions for us to be placed in such a way that I could reach out and place the medals over their necks.
I congratulated every one of the winners, and shook hands with them.
Some of them were not able to offer a handshake because of their clenched fists. So I gave them a hug instead. It was their day, and they certainly deserved to enjoy every minute of it.
I was happy to see the support given by the able-bodied people who provided the disabled athletes with an opportunity to shine.
I was informed by the organisers that our disabled sportsmen and sportswomen have brought in more gold, bronze and silver for the country than their able-bodied counterparts. Despite this, the paralympic does not get the attention it deserves in our society.
I left the event wondering whose fault this is? The media for not highlighting such events, or the public for not showing enough interest?
For more info, please call Tunku Maziah (% 03-7956 6666).

Invisible among us

2010-05-27T20:13:00.000+08:00

Thursday May 27, 2010

‘Invisible’ ones in our midst

WHEEL POWER
By ANTHONY THANASAYAN

Society needs to adopt a more caring attitude towards the elderly.
MY article a fortnight ago on preparing our nation to embrace an ageing population seems to have struck a chord with readers.
An elderly caregiver of a Parkinson’s patient rang me up and lamented: “As an elderly person, I feel virtually ‘invisible’ when I am out in public. Banks, shops and government buildings pay little attention to my needs as an ageing individual.
“Car parks are too far away from buildings, overhead pedestrian crossings have become useless now that I can’t climb the stairs, and long queues are no longer challenging to me.”
Another reader asked: “Are our town planners and engineers taking into consideration the needs of an ageing population in their designs and policies?”
I put that particular question to Assoc Prof Dr Norlinah Mohamed Ibrahim, head of the neurology unit at Universiti Kebangsaan Malaysia Medical Centre in Cheras, Kuala Lumpur.
Dr Norlinah was quick to confirm the increase in the number of individuals aged 60 and above.
Quoting the United Nations’ document World Population of Ageing 2009, Dr Norlinah pointed out that the number of older persons in the world would exceed that of children by 2045.
“The last four national census from 1970 to 2000 showed a decline in the proportion of younger individuals whilst the elderly are on the rise, owing to improved healthcare and declining fertility,” said Dr Norlinah.
By 2020, the percentage of elderly individuals in Malaysia will be 9.5% of the total population, with females outnumbering males.
“This shift in the ageing population has significant economic, social and healthcare implications,” said Dr Norlinah, who is also chairman of the Movement Disorders Council, an expert body appointed by the Malaysian Society of Neurosciences.
She went on to explain the effects. With the reduction in income earners, more economic demands will be placed on the government to care for the rising elderly population.
Despite the setting up of the various social security plans – such as pension funds – to cater for the financial needs of the elderly, not all individuals subscribe to them.
Other factors include social isolation and neglect.
Living arrangements within the extended family is one form of long-term care for the elderly. Others include live-in carers (such as domestic maids) for those with financial means. For those without such means, old folks homes, community support programmes and other social services need to be put in place to ensure that the elderly are not neglected.
Dr Norlinah believes the community needs to adopt a more caring approach in the care of the elderly. Everyone must take responsibility.
“Healthcare issues probably have the greatest impact on the elderly population. As age advances, diseases also become more prevalent. The most common problems affecting the elderly are eyesight problems, followed by dental care and rheumatism.
“Some of these problems may be significant enough to affect daily functioning,” said the consultant neurologist who specialises in Parkinson’s disease and movement disorders.
According to Dr Norlinah, an increase in the survival of patients with chronic diseases such as hypertension, diabetes, stroke, and cardiovascular and kidney problems due to improved healthcare services, adds to the number of medical conditions among the elderly.
“In addition, neuro-degenerative diseases such as Parkinson’s and Alzheimer’s are more prevalent with advancing age.”
These diseases will eventually affect their daily functioning, resulting in an increased dependence on caregivers.
The good news is that with the recognition of some of the problems highlighted, the government has taken steps to improve care for the elderly.
“Geriatric services with improved medical and social care have been established in certain hospitals in the country, with the provision of home-care nursing and home visits, among others. However, more of such services are needed. Better community support services are required to reduce over-dependence on primary caregivers.
“Health education and better rehabilitative programmes to improve the health status of the elderly population are needed.
“More research should be done on the ageing population to assist the government in drawing up appropriate policies for the care of the elderly in Malaysia,” added Dr Norlinah.

Horror trip

2010-05-21T00:15:00.001+08:00

Thursday May 20, 2010

Horror trip

WHEEL POWER
By ANTHONY THANASAYAN

Trip to Land Office turns into a nightmare.
I HAVE always been a strong supporter of public awareness, especially when it comes to people with disabilities and the many unnecessary barriers placed before us that prevent us from living a normal life.
Whilst most of my disabled (and even able-bodied) colleagues had at times run out of patience when trying to educate the non-disabled about the needs of the handicapped, I’ve always managed to muster extra patience when dealing with those on the opposite end of the spectrum. Not, however, last Thursday at the Land Office in Gombak, Selangor.
What transpired there was shocking and unacceptable.
A disabled couple – the gentleman, paralysed from his neck down, and his wife, a paraplegic – dropped by the Land Office just before noon. Instead of being attended to immediately, they were largely ignored.
When the flustered couple insisted on seeing the district officer, they were told he was at a meeting in his office. They were asked to go home, make an appointment, and come back another day.
Did these people bother to consider the difficulties the couple faced getting to the Land Office?
According to the couple, the district officer went out at lunchtime and did not even bother to see them. Nobody was assigned to deal with their problem, either.
Things went from bad to worse during their three-hour ordeal.
Even the couple’s personal helpers were not able to help them overcome the obstacles at the Land Office building that ironically bore “disabled-friendly” signage.
The designated carpark for the disabled was too far from the entrance of the building. It was uncovered and visitors in crutches would have a hard time walking to the building.
To exacerbate matters, the handicapped are forced to cross an internal traffic of vehicles. Imagine how scary this can be for someone in crutches or in a wheelchair.
The only carpark that was next to the entrance was reserved for the district officer. It was ironically placed next to the wheelchair ramp.
The wheelchair ramp was much too steep and unsafe for use. It clearly did not follow building guidelines. What’s more, the ramp was wet and slippery, no thanks to water leaking from the roof.
Then came the nightmare of nightmares, especially for women with disabilities.
There was no disabled-friendly loo in the women’s restroom. Instead, disabled women would have to enter the men’s toilet, in full view of the urinals, before they can get into the cubicle to answer nature’s call.
I can’t imagine how an important government building such as the Land Office could subject disabled women to such a violation of their rights and dignity.
When we asked the authorities how they could allow such a thing to happen, they told us the building was about 30 years old and that they lacked funds to provide disabled-friendly toilets for women.
With the number of disabled persons on the increase and Malaysia moving towards an ageing nation status by 2035, we need to ask ourselves: how long are we going to keep on giving the same old excuses of old buildings and lack of funds to keep out a significant number of people who have been wrongfully marginalised?
Is it really a lack of funds or is it just sheer neglect in looking into what is truly important in our policies and where our spending should go?

Needs of the elderly

2010-05-13T21:09:00.002+08:00

Thursday May 13, 2010

Needs of the elderly

Wheel Power by ANTHONY THANASAYAN

Get ready to embrace an ageing population.
I WILL only be 50 years old this November, but I can’t help thinking about what life would be like in our society when we grow older.
I raised this up at three important meetings in three different places. The first was on my home ground at the Petaling Jaya City Council (MBPJ) where I serve as councillor.
I brought up the issue of elderly persons’ needs at the monthly full board meeting which is attended by the mayor, all the councillors and heads of departments.
I raised this question: “Twenty-five years from now, will we as decision-makers, planners and engineers of our beloved city, be able to smile proudly when we look back at PJ, and say that we had done the needful during our tenure of service to make our environment liveable in order to accommodate us in our old age?
“Do we live and conduct ourselves with the full realisation that we are growing older each day and may one day require special people-friendly facilities? These include covered car parks to protect us from the elements, and toilets wide enough for our children or caregivers to provide some assistance for us.
“What about public parks? Will they continue to be designed only for the fit and young? Or will the outside environment include facilities which enable the elderly to go out and enjoy some fresh air, sunshine and green therapy?”
I was referring to a recent United Nations report that our country is likely to reach an ageing nation status by 2035 with the number of people above the age of 60 reaching 15% of the population.
Welfare Department deputy director-general (Operations) Halijah Yahaya confirmed that the UN statistics was proof that the percentage of ageing people in Malaysia was on the increase.
Incidentally, the United Nations categorises any country with 10% of its population above the age of 60 as an ageing nation.
Speaking at a seminar on caring society in Kuantan, Halijah concluded: “The Government should view seriously the ageing rate among the population because old people have their own requirements.”
I was delighted that no one in MBPJ tried to pretend that enough was being done at the policy level at the moment to include the needs of elderly persons.
Instead, everyone at the full board meeting gave their thumping support to the motion to start planning now so that the city will be ready to embrace more elderly people and their needs in the future.
A similar reaction was received from KTM Berhad in Rawang, Selangor, and the Ministry of Transport (MOT) in Putrajaya.
A group of us in wheelchairs were invited to the local train station to give our input on the present wheelchair-facilities. We found a number of areas where improvements could be made, for example, the toilet doors, uneven pavements and other areas that could pose a hazard to elderly passengers.
KTM Berhad took our suggestions positively and promised to make the necessary changes.
We also had a discussion with the train’s audit access team, and took the opportunity to stress to them the urgency of making the changes now.
At the MOT, we were delighted when Minister Datuk Seri Ong Tee Keat also gave the thumbs up to our suggestions. He told us that he himself knew exactly how we felt when he had to use a wheelchair temporarily.
During his meeting with many top guns from the airlines industry, he stressed that disabled and elderly persons should always receive top priority in their services.
The minister said that wheelchairs should be available free-of-charge at airports. He also urged airports to provide special transport vehicles such as ambulifts to carry disabled passengers into the aircraft where aerobridges were not available.
Airports should also consider Deaf passengers during emergencies, he said. Flashing light alarms should be provided at the airport – and even in the restrooms – to warn hearing-impaired passengers if there is a fire as they are unable to hear alarm sirens.
The minister also stressed the need for customer service staff in all airline companies to be trained in assisting disabled passengers.
“They must have some basic understanding of disabilities (and old age problems) and know exactly what to do to make such passengers’ travel comfortable,” added Ong.
One other issue that was raised at the MOT meeting last week was for airports to provide parking lots for the disabled at the entrance, instead of reserving these lots for VIPs.

Sheer dedication

2010-05-06T14:02:00.000+08:00

Thursday May 6, 2010

Sheer dedication

WHEEL POWER
By ANTHONY THANASAYAN

Mothers of special children are feted by the Kiwanis Club.
PEOPLE in many countries will be observing Mother’s Day this Sunday. At this time each year, I have the privilege of sharing with readers the wonderful stories of many mothers of disabled children or who themselves are handicapped and have had to raise their children in a world that gives little attention to their special needs.
The Kiwanis Club of Taman Tun Dr Ismail (KITT) in Kuala Lumpur was only a small band of volunteers some 15 years ago when they decided to set up a centre for children with learning disabilities.
While catering to children with various mental and physical disabilities – ranging from dyslexia to autism and Down’s syndrome – it quickly became obvious to the group that it was not sufficient merely to provide a place where the children could sing a few songs and trace the alphabet.
“We felt a responsibility to develop, as best as we could, each special child’s potential, and to help them find their niche in a world which often sees them as damaged goods,” explained Firoza Burhan, vice-president of KITT and a mother of a learning-disabled teenager.
“I remember one time when KITT brought our children to a fast food outlet, one woman pulled her son away, as though fearful that her child would be ‘contaminated’ somehow by our presence,” she said, in pointing out that prejudice still exists against people with disabilities.
Firoza, who is also Regional Programme Manager with the International Committee of the Red Cross in Kuala Lumpur, stressed the fact that disability does not only touch the lives of the children, but also their parents.
She recalled an encounter she had with some mothers at a seminar during lunch break when one of them suddenly broke down. Her eldest son, born with mental disabilities, was becoming increasingly difficult to handle.
Instead of helping her be positive about the situation, her in-laws blamed her for bringing bad luck to the family whilst her husband ignored their child.
Despite the stress on her marriage and personal health, that mother refused to give up on trying to make a life for her son. Her main worry, however, was what would happen when she passed on.
“KITT saw a need to recognise the dedication and love of such mothers towards their special children,” Firoza pointed out. “So we came up with our first charity dinner with a difference, called Anugerah Ibu Kiwanis (Kiwanis Mother’s Award) or AIK.
“We timed the awards with Mother’s Day in order to provide an appropriate platform to recognise the dedication and love of our special mothers.”
Firoza said that since the first Kiwanis Mother’s Award event, as many as 50 mothers from all walks of life have been feted. On such occasions, they are treated like VIPs and sit with numerous guests-of-honour and share the stage with top local performers who dedicate their songs to them.
One scene that is etched in Firoza’s memory is of crooner DJ Dave on his knees, singing his heart out before an elderly mother from a small village who single-handedly looks after her four adult disabled children.
“A lot of people still don’t realise the many challenges these mothers have to deal with every day of their lives.
“We need support from all sides – the family, society and especially the government, to provide more teachers with special education skills and better allowances.
“We are not asking for pity. Our children are not a tragedy. We love our children very much. We are just asking for equal opportunities (for our children) as for non-disabled children,” concluded Firoza.
As part of the 10th anniversary of the awards this year, KITT is planning to bring together its past recipients for a celebration of life and love (date to be announced later).
KITT, which is entirely made up of volunteers, is looking for more volunteers to help out at this special event as well as to help children with learning disabilities.
■ For details, contact KITT (tel: 03-7722 1314) or the president/organising chairman of the awards, Rizman Ghazali (012-202 5199).

Defining moment

2010-04-29T23:51:00.001+08:00

Thursday April 29, 2010

Defining moment

WHEEL POWER
By ANTHONY THANASAYAN

The signing of the Global Declaration For Parkinson’s Disease marks a special occasion for Parkinson’s patients.
MY JOB as city councillor for Petaling Jaya and my work as president of Petpositive, an association for animal-assisted therapy for the disabled and elderly in Kuala Lumpur, often require me to attend social functions. Last Sunday I was invited to a gathering of people with Parkinson’s.
The event turned out to be one of the most unusual that I had attended in a while. I was informed later that the experience was equally inspiring for the rest of the VIP guests seated at our table.
We were there together with about 200 people with Parkinson’s (PwP), their caregivers and supporters, to witness the signing of an important document called the Global Declaration For Parkinson’s Disease.
The international charter was put together by the Geneva-based World Health Organisation in 1997. The charter for the world’s estimated 6.3 million PwP (more than 15,000 in Malaysia) promises to make a big difference for PwP around the globe.
With Malaysia’s signing of the charter earlier this month, and by PwP themselves last Sunday, it is hoped that the Government and healthcare providers would respect the rights of the PwP as laid down in the charter.
The declaration stresses the need for access to appropriate treatment for PwP, as well as the right to manage their own conditions. It highlights the need for greater awareness of Parkinson’s disease to combat stigma and discrimination.
Partnerships between neuroscientists and health workers need to be encouraged to devise ways to improve access to care and treatment for all PwP.
Special care should be taken to include the management of the side-effects of medication, especially for the elderly.
The official document also highlights the need to reach out to all ethnic and cultural groups to help them overcome the negative attitudes of society towards those with a chronic illness like Parkinson’s.
Among the VIPs present were doctors, a welfare official, a politician, managers of drug companies and social activists.
The most inspiring moment came when it was time for the PwP to sign the document. They came forward in their wheelchairs, pushed by their caregivers.
They could be seen fighting with their conditions as they struggled to move their stiffened bodies and keep their hands still so that they could hold the pen and put down their signatures.
When one of the speakers wished for a cure for PD within a few years, they all cheered as loud as they could with their weakened voices and tried to clap their hands as best as they could.
When it was suggested that it was important for everyone to stay on top of their conditions no matter if a cure was found soon or not, everyone nodded their heads in agreement.
The half-day event which began at 10am and lasted until lunchtime at a hotel in Kuala Lumpur also had PwP actively participating in the programme instead of remaining as spectators as is sometimes the case when events are organised for the disabled.
One could see how delighted they were to participate in the celebration. Sunday’s event incidentally was part of the celebrations for World Parkinson’s Day which was observed on April 11.
All the solo and group singing and dancing was therapeutic for the PwP as it helped loosen their stiff muscles, and gave them a much-needed workout.
Some even played the harmonica; it got the rest of the audience clapping and dancing along.
Most importantly, the PwP got to do what they wanted – no matter how slowly or how long they took to get it done.
“It was a rare day out for PwP,” observed Dr Norlinah Mohamed, one of the advisers for the Malaysian Parkinson’s Disease Association in Kuala Lumpur, which organised the event.
“It is vital for PwP to get out to have a good time with others so that they know they are never alone in their struggles,” added the Parkinson’s Disease expert who is attached to Universiti Kebangsaan Malaysia Medical Centre in Cheras, Kuala Lumpur.
Incidentally, Dr Norlinah was appointed last Saturday as chairperson of the Movement Disorders Council, an expert body which is appointed by the Malaysian Society of Neurosciences.

Staying on top

2010-04-17T16:53:00.000+08:00

Thursday April 15, 2010

Staying on top

Wheel Power by ANTHONY THANASAYAN

A glimpse of the battle that Parkinson’s patients face.
PEOPLE with Parkinson’s disease all over the world observed World Parkinson’s Day (WPD) last Sunday.
Although PD is prevalent among the older age group, it can affect anybody. Though there is no known cure, the disease is treatable.
Recently I spoke to PD expert Dr Norlinah Mohamed Ibrahim, and asked her how the disease affects sufferers.
Dr Norlinah is Associate Professor and Head of the Neurology Unit at Universiti Kebangsaan Malaysia Medical Centre in Cheras, Kuala Lumpur.
She is also a consultant neurologist who specialises in PD and movement disorders, and is one of several medical advisers to the Malaysian Parkinson’s Disease Association.
Dr Norlinah shared stories of patients who came to her for help:
MK was diagnosed with PD when she was 60. She had no idea that there was something wrong until her friends and her husband noticed that her right arm stopped swinging when she walked. She also experienced fatigue. However, MK dismissed it as part of the aging process.
Then things worsened. When MK’s slowness became more exaggerated and her hands started shaking uncontrollably every time she was excited or anxious, she went to see Dr Norlinah.
“She displayed all the typical features of PD,” said Dr Norlinah, who started her on treatment at once. “Today MK is able to perform her daily chores.”
SY, who works with the police force, is another example. Before his diagnosis, he experienced severe leg cramps in the early morning that disturbed his sleep.
The GP failed to detect PD, and prescribed vitamins for SY’s cramps.
His cramps got worse and depression set in. SY was unable to perform his duties. After SY was correctly diagnosed with PD by a specialist and treated for his depression, things started to look up. SY was shocked to discover that he had PD at the young age of 40.
Today with support from his family, SY is doing all he can to stay on top of the disease.
TP was 55 when told that she had PD. Only the left side of her body was affected then. Today, both sides of her body have become stiff and she experiences frequent tremors.
TP has to take medication up to four times a day. If she misses a dose, the symptoms recur.
TP also suffered from uncontrollable “twisting movements” of muscles in the neck and trunk. She discovered that she had developed a condition called dyskinesia, one of the complications of long-term treatment with a PD drug called levodopa.
Because of the embarrassment caused by the uncontrollable movements, TP isolated herself at home.
“It was only after TP was treated that she started to develop a more positive attitude and became more cheerful,” shared Dr Norlinah.
KA was 25 when he was diagnosed with a rare genetic form of PD. His treatment began soon after diagnosis.
Today, at 40, KA experiences hallucinations, some of which are quite frightening to him. He sees “people” in his house. Sometimes “they” would come to him and disturb him, especially at night. Once, he thought “they” were trying to harm him and he stood at the gate of his house and yelled for help.
“Hallucinations are common in the advanced stages of PD,” said Dr Norlinah. However, with proper medication, the nightmares are becoming a thing of the past.
The Malaysian Parkinson’s Disease Association can be contacted at 35, Jalan Nyaman 10, Happy Garden, 58200 Kuala Lumpur (% 03-7980 6685 / fax: 03-7982 6685 / e-mail: mpda1@streamyx.com)

Making life better for people with Parkinson's disease

2010-04-08T20:19:00.000+08:00

Thursday April 8, 2010

Making life better

WHEEL POWER
By ANTHONY THANASAYAN

Is enough being done for people with Parkinson’s disease and their caregivers?
WORLD Parkinson’s Day will be celebrated this Sunday. Many events will no doubt be taking place to bring awareness of this insidious disease of the nervous system which causes muscle stiffness and tremors.
“Recent scientific advances have shown that Parkinson’s disease is a more complex condition than was originally thought,” says Assoc Prof Dr Norlinah Mohamed Ibrahim, Deputy Head of the Department of Medicine at Universiti Kebangsaan Malaysia Medical Centre in Cheras, Kuala Lumpur.
“Previously thought to only affect mobility and movement, we now know that non-movement (non-motor) problems also predominate. Constipation, depression and anxiety may even predate PD,” explains Dr Norlinah, a consultant neurologist who specialises in PD and movement disorders.
While therapy was previously geared towards treating the motor problems alone, research has shown that the patient’s quality of life is also dependent on the successful treatment of non-motor aspects.

Therapy: Exercise is important for Parkinson’s patients.

What is important is how people with Parkinson’s (PwP’s) and their caregivers are being helped with all the advances made in the understanding of the disease, says Dr Norlinah.
Dr Norlinah points out that patients living in cities will have more access to neurologists than those living in rural areas.
“The lack of neurologists in the country is one thing. Trying to get an expert with a special interest in PD makes the situation even more complicated.
“There are an estimated 10,000 to 15,000 patients with PD in Malaysia. The number is expected to double in the next 30 years, especially with an ageing population.”
Dr Norlinah highlighted the case of a patient who came to her whose diagnosis of PD was missed by another neurologist.
The patient couldn’t understand why the movements on one side of his body were becoming increasingly difficult and slow.
He was told that he had a stroke. The more he questioned the neurologist, the more he was labelled as being too anxious. He was advised to accept his diagnosis of a stroke.
“The patient went through a lot of anguish and pain, as he couldn’t perform his work effectively and he was advised to go for optional retirement by his employer.
“By the time a proper diagnosis of PD was made, it was too late. His career went downhill together with his health.”
Dr Norlinah also pointed out cases of patients who were wrongly diagnosed with PD, a situation that can happen because of the many conditions that mimic the clinical features of Parkinson’s.
“This is why PwP must have access to the best medical care, especially in the early stages, so that accurate diagnosis can be established,” she stresses. But is this achievable in Malaysia?
For that to happen, Dr Norlinah suggests the following measures:
> An effective referral system between general practitioners and neurologists. All patients suspected to have PD should be referred to a neurologist to ensure that a correct diagnosis is given. After which the patient could be co-managed by a GP and guided periodically by a neurologist.
> More training for neurologists and physicians in Parkinson’s diagnosis and treatment. This will cut the long waiting lists and travelling distances for those in rural areas.
> More public awareness of the symptoms of PD to ensure that patients come for treatment early on.

Celebrating life

2010-04-01T21:22:00.000+08:00

Thursday April 1, 2010

Celebrating life

WHEEL POWER
By ANTHONY THANASAYAN

Tribute to a trusty companion.
GUESS who celebrated his sixth birthday yesterday? The birthday boy was none other than Biman III, my trusty German shepherd.
He was picked up as a pup six years ago. His mission was not an easy one for a seven-week-old pup. His job: to fill the paw prints left by a sterling German shepherd called Biman II.
That large and powerful black and tan canine was responsible for spending much of his doggy life helping me to cope with depression. Through my interaction with him, I was able to come to terms with my disability.
Biman II’s untimely death seven years ago taught me about positive living. I learnt how important it is to stick by your friends as Biman did for me during the good and bad times.
I hugged him close to my chest as the veterinarian injected a lethal dose to end his suffering from cancer.
It was the hardest decision I had ever made. The amazing canine had taught me how to say one’s final goodbye when the time comes.
My heart still bleeds every time I think of his passing, I try to focus on the celebration of life in memory of that angel of a shepherd who had influenced my life so much.
To do anything otherwise would be a betrayal of everything that Biman II had lived and died for during the journey that we shared together.
Although Biman III is quite a different dog in his own right, his relationship with me is still based on the same principles as his predecessor’s. I had no trouble picking him out from a dog farm in Klang because he was the only pup among the litter that made me laugh with his antics. I caught him peeing quietly in the breeder’s office when no one was looking.
Biman III came into my life six months after his role model had died. The toughest task was getting to know and bond with each other.
The early days of training were difficult. I religiously followed every detail on the service dog training manual that was given to me by the International Association of Assistance Dog Partners in Michigan, the United States.
The little boy had a number of exercises which he had to pass every day.
He had to lie down on my bed with me, retrieve objects such as drinking cans and pencils on the floor, learn to keep pace with my wheelchair, and go out on daily rides in my car.
The first big break came one day when he accidentally broke loose from my grip and dashed off in a field full of people. But he stopped short in his tracks and made an about-turn and leapt into my arms the moment I called out to him.
Today Biman III is the top dog among my other service dogs which included another German shepherd, a Golden Retriever and a Shetland sheepdog.
He is the only one who is able to open and close the doors of my house and pick up a number of objects from the floor. He watches me like a hawk when I’m working on my computer late at night and when I’m in the bathroom. At the slightest hint of trouble, he is by my side in a flash.
When I’m asleep he is right beside me, too. All I need to do when the lights are switched off is to put my hand to my wheelchair.
I’m at once greeted by a wet nose and a warm lick in the pitch dark assuring me: “Don’t worry pal, you are in good hands, I’m right here beside you.”

Unique Family Support Forum in Petaling Jaya

2010-03-25T20:05:00.002+08:00

Thursday March 25, 2010

Changes for the better

WHEEL POWER
By ANTHONY THANASAYAN

The needs of the disabled and their caregivers are finally receiving some attention.
TWO events with ramifications for people with disabilities took place last week.
The first happened in a community hall in Section 3, Petaling Jaya, where a group of nearly a hundred – mostly parents and caregivers of the handicapped – attended a half-day forum on how to be more effective in their roles.
It was part of a community-based rehabilitation exercise organised by Taman Medan assemblywoman Haniza Talha.
This workshop was special for several reasons. First, it was targeted at parents and caregivers of disabled persons. The pillar of strength for the disabled, this group has been largely invisible to the public, the media and the Government.
Not enough attention is being given to those who endure hardship in raising a handicapped child. Quite a few have to cope on their own with two or even three disabled family members.
Before the event began, I went around the hall and spoke to some of the parents.

Blind trust: The blind are easy targets for crooks. It is difficult for them to distinguish between a genuine law enforcement officer and a con man.

I was shocked to discover that they had little support or information on how to bring up their disabled kids even though they had access to specialists and lived in a vibrant city like Petaling Jaya.
Clearly those involved in rehabilitation medicine need to change their present method of treatment in hospitals and find an effective way to reach their patients in their own homes, like what is being done in outreach programmes in many countries.
I was especially delighted when I learned that Haniza was planning to set up a support group for poor parents in her constituency so that they could come together and share their resources.
The speakers at the forum were disabled persons with various handicaps.
A tetraplegic shared how he overcame depression and suicidal thoughts after he became handicapped following a road accident.
He spoke about how his mother eventually changed her negative perception when she saw him helping other people in a similar situation.
Another highlight was a presentation by a rehabilitation doctor who showed slides of aids available to the handicapped in Malaysia, in the form of special wheelchairs and shower equipment.
Many of the participants were seeing such things for the first time.
They told me later that they were greatly encouraged by the disabled role models who spoke about their experiences.
Meanwhile, disabled Malaysians who are worried about personal safety will soon have a reason to smile, following a special meeting between representatives of the disabled and the police force.
About 30 people – 10 of whom were top brass from the police force while the rest represented people with disabilities – met at the Jalan Travers police station in Kuala Lumpur last Wednesday.
Arranged by the National Welfare Department, the meeting was a follow-up to the one held in October last year. I wasn’t at the meeting but several physically-disabled activists who were present told me that it was very promising.
The police force was once again briefed on the problems faced by the disabled community in matters related to crime and protection.
These included the difficulty the blind have in distinguishing between a law enforcement officer and a crook pretending to be one.
One disabled woman related how she was robbed in broad daylight at a centre for the disabled, by machete-wielding assailants. She was in a state of shock and called the police, only to be told to “come over to the station to make a report”.
In a recent incident, a middle-aged man in a wheelchair was kicked by an assailant in public. Charges have yet to be filed against the offender.
The issue of wheelchair accessibility was also raised. Those who came in wheelchairs found the ramps in the newly-built police station, to be too steep. They couldn’t wheel themselves up without assistance. The ramp was also partially blocked by a flower pot and a signboard stand.
The lifts had no Braille buttons and no voice activation. The so-called handicapped-friendly toilet had hardly any room for manoeuvring. The grab bars were all fitted wrongly and the toilet did not have sliding doors.
As for the car parks, they were too far from the entrance. Disabled visitors are forced to negotiate oncoming traffic to get to the building which is located across the disabled parking lot.
The police promised to look into the complaints straight away.

Bumpy ride on Air Asia - The Star

2010-03-18T15:01:00.000+08:00

Thursday March 18, 2010

Bumpy ride

WHEEL POWER
By ANTHONY THANASAYAN

Airport encounters that call for an attitude change.
STANISLAUS Anthony, 60, and his wife Janet, 53, were overjoyed last month when their son surprised them with a trip to India. Joachim, 26, paid for his parents’ 10-day pilgrimage to a healing centre in Kerala in South India.

Joachim decided to accompany his parents since they are persons with disabilities.

Stanislaus became disabled 12 years ago after he underwent a hip replacement surgery. Although he is able to walk, he can only do so for very short distances. He tires easily and the pain in his left leg is often excruciating. When this happens, he uses a wheelchair.

Janet, on the other hand, has been diagnosed with muscular dystrophy.

The couple and their son joined a crowd of 5,000 pilgrims at the centre. It was an experience of a lifetime for the trio.

I caught up with Stanislaus and Janet when they returned to Petaling Jaya a couple of weeks ago. Instead of telling me about the difficulties they encountered as disabled persons in a foreign land, they couldn’t stop telling me about the many problems they had to overcome before even leaving Malaysia.

When Joachim booked the flight online, he recalled ticking a box on the form to indicate “Disabled (passenger)”. No further questions were asked about the disability status.

So the eager retirees thought that all their accessibility needs would be looked into when they arrived at the airport.

When Stanislaus reached the Sepang airport, he was shocked to find that the only disabled parking spot next to the building entrance was occupied by a car belonging to a non-disabled driver.

He had no choice but to park his specially-adapted car next to the offending vehicle.

Then came the second upset. Despite the numerous stickers on his car clearly indicating that he was a disabled driver, he was promptly served with a summons.

The real offender, meanwhile, got away scot-free.

However, this was nothing compared to the nightmare that was yet to come. The disabled couple were made to climb up a flight of stairs before they could board the aircraft. The ambulift – a specially designed contraption to lift wheelchairs into the aeroplane – was out of order, they were told.

After the rest of the passengers had boarded the plane, it was their turn. Stanislaus has had frequent hip dislocations over the past year. He was terrified as he took each step up the stairs. Janet was on tenterhooks, too.

Once inside the plane, the couple had to walk almost halfway across the length of the plane to get to their seats. Stanislaus wondered why the airline had not made things easier for them and changed their seats to one of the front rows instead.

Only on their return trip were they given front-row seats.

The couple also raised a few points:

> The staff were ill-advised on how to help disabled travellers. When the couple were struggling up the steps leading to the aircraft, there were only two small-sized women and one man on standby in case of emergency.

> Although there was an express lane for disabled/elderly passengers at the airport in India, none existed in the Sepang airport.

> The ambulift was still under repair when the couple returned from India. The wheelchair provided by the airport in Sepang had wheels that wobbled. Stanislaus was charged RM15 for the use of the wheelchair and no receipt was issued. In India, the wheelchair service was free.

“All this clearly calls for an attitude change from the airline and the airport authorities if they want everyone to fly,” said Stanislaus.

Turning the tables

2010-03-11T14:48:00.002+08:00

Thursday March 11, 2010

Turning the tables

Wheel Power by ANTHONY THANASAYAN

Life is unpredictable and we can sometimes find ourselves on the other side of the fence.
IHAVE been learning a lot of things lately. The most recent has been about local councils. For example, when you find yourself in a head-on collision with them, what do you do? Is it better to fight them or engage them and try to get them on your side?

As someone who champions canine issues, I never thought that one day I would suddenly find myself on the opposite side of the fence, so to speak. That happened recently over press reports of allegations of cruelty in a particular dog pound in Selangor.

Now please, don’t misunderstand me. It’s not that I believe nothing bad took place in the pound. It very well could have. As animal activists, we know such cases may occur at one time or another in local council pounds.

Pictures of so-called “acts of cruelty” going on at the pound were one thing. However, my problem was in believing some of those nasty stories. Particularly so when I had visited the pound in my official capacity as Canine Advisory Team (CAT) chairman of my local council.

Whatever really happened became lost as a result of the contradictions and exaggerations. For example, reports of dogs being systematically starved to death were suddenly changed to that of dogs being abused and fed with only white rice.

Similarly, reports of canines being drowned or torched alive sounded like something out of a horror movie. And some of these supposed “animal torturers” were people who regularly attend our monthly CAT meetings.

What I don’t understand is that if such heinous acts were being committed, why weren’t police reports made? Or lawyers employed to take the perpetrators to court, especially if incriminating pictures existed?

The truth of the matter is that the Department of Veterinary Services (DVS) – the right body to take action on such matters – had visited the local pound last week, as they had done several times before. The pound was given the all-clear after the DVS recommended measures for its improvement.

Last week, a group of disabled activists and I visited the very same local council for a totally different matter.
We were there in our wheelchairs mostly to conduct an access survey exercise on how friendly the local council building was to people with disabilities.

We decided to take a more-friendly approach with the council. None of us shouted or hurled accusations at them even though we were unhappy with the condition of their building.

Instead, after tea, we got them to take us on a tour of the building and made a critical assessment of what we saw around us.

But not before getting some of the building, engineering, planning and landscape experts into wheelchairs or blindfolding them to enable them to experience what life was like for persons with disabilities.

We watched as an engineer struggled to get his wheelchair into the men’s restroom. He became so frustrated that he jumped out of the wheelchair in the end.

I asked a blindfolded key building staff to push the non-Brailled buttons in the lift to get us to the ground floor. She had no idea where the buttons were or which button to press for which floor because there were no markings on it for the blind.

And when we got to the right floor, she was totally unaware as there was no voice synthesiser to indicate which floor the lift had made its stop.

The two hours spent on the exercise was a huge learning experience for both parties.

For the town planners, it was an eye-opener that the needs of an important community had been ignored by the council.

Now imagine if we had decided to take an aggressive approach. For us, it was a simple and valuable lesson when it comes to local councils: There is always a better way to skin a cat.

Note: Pictures are courtesy also of Independent Living and Training Centre in Rawang, Selangor.

Vital Support

2010-03-05T01:47:00.003+08:00

Thursday March 4, 2010

Vital support

WHEEL POWER
By ANTHONY THANASAYAN

Mental health patients need all the support they can get from family, friends and employers.
LAST week, I received a distress call from a friend. Whilst driving, he had spotted a man lying in the middle of the road, in a suicide attempt.
The man, who was suffering from depression, was rescued in the nick of time by the police and sent to the hospital for treatment.
The man in question was someone I know. I know his family, too. His father, who has since passed away, was always worried about his son and the plight of people with mental illness in the country.
The good news is that people with mental illness were officially recognised as disabled persons last year. This came about after NGOs lobbied the authorities so that people with mental illness could have access to free or discounted medication from the Government.
Dr Andrew Mohanraj, a psychiatrist, strongly believes that recognising a mentally-ill person as a disabled individual is the right way to go in reaching out to them.
“Major depression, bipolar disorder, schizophrenia, obsessive compulsive disorders and a few other conditions that are considered serious mental disorders should be seen as a disability because they disrupt a person’s thinking, feelings, mood, ability to relate to others and daily functioning,” explains Dr Andrew, who serves as Director of the Acheh Psychosocial Rehabilitation Programme which he started after the 2004 Asian Tsunami.
Dr Andrew points out that mental illness often results in a diminished capacity for coping with the ordinary demands of life. So it is warranted that such people be classified as persons with disability.
“People suffering from these illnesses have as much hope of living independently and with dignity as others without the condition,” he points out, adding that this is possible with the current technological advancement in psychopharmacology and psychotherapy. However, Dr Andrew cautions that there are many subtypes of disorders that are severe and not easy to treat.
If support from family, friends and employers are not forthcoming, the result can be debilitating.
Dr Andrew believes that employers should understand the need to support employees with mental disorders to help them cope with the illness at an early stage.
“If left unsupported, the illness may get worse, and eventually the employee will be asked to leave. When this happens, the loss will also be felt by the employer in terms of costs and effort in training a new worker.”
Dr Andrew, who is also a World Health Organisation (WHO) expert on community mental health, says WHO predicts that by the year 2020, depression will be the No.1 cause of disability, overtaking cardiovascular diseases.
“Stress-related disorders in the workplace will be a major cause of decrease in productivity,” he points out.
“Employers must encourage employees diagnosed with depression to start early treatment as this will eventually save the organisation work days lost in absenteeism.”
Depression often goes undetected in the workplace. There is also a strong link between physical illness and depression.
Dr Andrew says employers, physicians and insurers should work together to encourage early detection, diagnosis and treatment of mental illness. However, this must be done without punishing or stigmatising the sufferers.
“In protecting the interest of people with chronic mental illness, the State should be obliged to ensure optimum primary care services, appropriate employment, halfway homes and housing for them. These should include support awareness programmes as well as assistance in stigma reduction.”
There is also a need to adopt an inclusive approach that would make it incumbent on employers to support workers with mental illness, instead of dismissing them. “The benefits of welfare and insurance also need to be looked into for stakeholders like employers and service providers,” says Dr Andrew.
“Whilst it is good that Malaysia has signed a significant piece of document called the UN Convention of Rights for Persons with Disabilities, it is unfortunate that it was signed with reservations and has not been ratified to date – two necessary steps needed to make it effective.
“However, the move to categorise chronic mental illness as a disability is a step towards embracing the letter and spirit of that document that was designed to bring about a qualitative change in the lives of all disabled persons,” adds Dr Andrew.

Special Meetings

2010-02-25T20:05:00.000+08:00

Thursday February 25, 2010

Special meetings

WHEEL POWER
By ANTHONY THANASAYAN

The disabled and the elderly in Selangor can look forward to brighter days ahead.
POSITIVE changes continue to unfold for people with disabilities in Selangor. Two significant developments transpired last week which can only improve the quality of lives of Malaysians with disabilities.
The first was a special meeting with a group of physically disabled persons that was held at the Selayang Municipal Council (MPS). I was there, too.
We went there on the invitation of the local council. The purpose was to form a special committee on disability under the MPS.
We were thrilled with the people who met us. They were officers with the capacity to bring about big changes for the handicapped and elderly in town. Those who met us were key representatives from the engineering, planning and building departments of the MPS.
It was a fruitful discussion. At the meeting, it was decided that they would first identify a select group of experts with disabilities to sit in the committee that will meet once a month.
This is similar to what is being done by the Petaling Jaya City Council’s (MBPJ) technical committee on disability, of which I serve as chairman.
The experts, apart from persons with physical disabilities, will include the blind, the Deaf and those with learning disabilities or their representatives.
Whenever possible, stroke patients and those with Parkinson’s disease, mental illness, etc, will be included. The aim of including persons with a wide variety of disabilities is to enable others to learn from their unique experiences and see things from their perspective. People without disabilities are often unfamiliar with the challenges facing the disabled. No textbook in the world can provide such invaluable feedback.
At the MPS meeting, we started our task of creating a disabled-friendly society by examining the local council’s headquarters building.
Next week, a group of disabled people and technical experts from the MPS will comb their building to look out for problem areas and make the necessary changes.
These will be documented and presented to the first OKU (orang kurang upaya or disabled) technical meeting before we venture out into town to look at other buildings.
All of us realised that we had a big task before us. However, we came to the conclusion that such an initiative was important to bring about much-needed changes for the special communities.
These were the same sentiments that were reached at another meeting of 12 local councils in Selangor. This meeting was held the following day at the MBPJ headquarters.
The key players from the planning, engineering, and building departments were asked to focus on collectively building a better world for the physically challenged.
The response was tremendous. Although not many of them took the opportunity to speak, they listened attentively to everything we had to say.
The meeting was jointly chaired by MBPJ’s head of planning Puan Sharipah Marhaini and myself.
We shared our many successes and dreams since we started our special committee on disability. These included coming up with covered parking lots for the handicapped and a revised up-to-date toilet design with more disabled-friendly features which all new buildings must comply with in Petaling Jaya. Otherwise, no approval will be given for their projects.
We also talked about our personal visits to homes for the elderly and disabled to ensure that they have user-friendly facilities for the residents there.
Our visits uncovered some alarming facts. A few of the homes and centres did not provide such facilities even though they have residents who use wheelchairs and walking sticks.
Marhaini pointed out that such on-the-ground visits served as an eye-opening experience for her.
“What may look good on paper may be a different story in real life,” she said, as she encouraged her colleagues to take a more proactive approach to such issues.
The highlight of the meeting was a pertinent point made by a town planner of a local council. She suggested that in addition to MBPJ – and now MPS – the rest of the 10 councils should follow suit and set up their own technical committees on disability.
However, she pointed out that it was not always practical to expect such a move to come about from the bottom up.
She added that some of us may lack motivation or a sense of urgency. So a more effective approach would be for the local councils to get a directive from the top. I couldn’t agree more.

Note: This story ranked at No 4 in the most emailed story of Star Online today at 8.15pm.

Fighting spirit

2010-02-19T18:40:00.000+08:00

Thursday February 18, 2010

Fighting spirit

WHEEL POWER
By ANTHONY THANASAYAN

With sheer determination and family support, a stroke patient gets back on her feet.

IT is always a blessing to be able to, as they say, grow old gracefully. But what happens when disability gets in the way?

Recently, I received an e-mail from BK who wrote in to share his personal story about his beloved mother GL. Now in her 90s, GL requires a wheelchair or walker to move about independently.

“Mum has outlived Dad who died seven years ago,” wrote BK.

As an orphan child, GL was cared for by an aunt and uncle. She only had a few years of primary school education at a convent before the Japanese Occupation interrupted her studies.

“Mum met and married dad who was a government school English teacher. She was the perfect wife and mother to all of us, her children – one girl and two boys.”

Life was very hard for GL who worked long hours daily.

“Mum would wake up before dawn to prepare our breakfast (using a kerosene stove) before packing us off to school,” wrote BK.

Chinese New Year was a special time to earn some extra income to support the family. GL would take as many orders as possible to make traditional biscuits for the season.

However, GL’s happiest moment in her life came when she became a grandma.

“Feeding, bathing and putting her grandchildren to bed gave her a renewed sense of purpose when we all grew up and started working in the city,” BK pointed out.

Then, one fateful night in 1981, everything suddenly changed for GL. Her children found her awake in the middle of the night, uttering gibberish. She had also wet the bed.

“The doctors told us something that none of us wanted to hear: ‘I’m sorry but your mother has suffered a stroke. The right side of her body and her speech were affected’,” said BK.

It didn’t take long for the effects of the stroke to start setting in.

On the first morning, GL had to battle with her frustration of not being able to speak coherently. She also couldn’t recognise letters or numerals, and struggled to move her right side.

“The frustration was so overwhelming that Mum broke down and cried,” recalled BK. “What was particularly hard for her was the sudden overnight change in her body. She had no will to live for another day.”

But things improved a little on the third day. GL was registered for physiotherapy sessions that helped her to get her muscles moving again, albeit slowly.

At the same time, the exercises also helped her brain relearn and find alternative pathways to function again.

“The effort to get Mum to try and walk again when she had no control of her muscles was an extremely painful experience for her,” explained BK. “But we are glad that Mum did not give up on the exercises.”

The slow and uphill road to recovery eventually yielded results for GL. “It was Mum’s pride, coupled with her strong willpower – she wanted to see her grandson grow up – that made her keep up with the exercises, overcome depression and get back on her feet again.

“Although over the years Mum has had other health problems, such as being diagnosed with osteoarthritis in her knees and undergoing a hip replacement surgery after a fall, Mum is still essentially the fighter that she has always been.”

GL wears a pair of hearing aids. She is still mentally alert and never fails to take her medication for her other ailments like pain, gout and high blood pressure.

With her fading memory and sight, she spends more time playing Solitaire these days.

“In situations like these, family support is always crucial. As caregiver for an elderly and disabled mother, my wish for the Year of the Tiger to see more government-supported projects that cater for an increasing ageing population,” concluded BK.

Good and bad

2010-02-12T02:12:00.000+08:00

Thursday February 11, 2010

Good and bad

WHEEL POWER
By ANTHONY THANASAYAN

Klang has seen positive change over the years but the attitudes of its people still need adjustment.
MY job as city councillor and president of Petpositive – a society for the disabled and the elderly – took me to several destinations in the Klang Valley last week.
A couple of trips to the royal town of Klang where I was born, brought back memories of my growing-up days.
Those were difficult days for me. Although I was born with spina bifida, I was only unable to walk at the age of 10 after a botched surgery which put me in a wheelchair.
I was confined to my house due to the lack of disabled-friendly facilities in my hometown. I had to stop schooling and spent my teenage and adult life within the confines of my home.
I am happy to see how much Klang has changed over the years. I am delighted to see so many well-placed parking lots for disabled drivers. Such facilities will encourage more disabled and elderly persons to come out and mingle with the rest of society.
But alas! I saw some of the disabled parking lots being used by able-bodied drivers, depriving the handicapped of their rights.
I wonder what measures the Klang authorities (MPK) are taking to rectify the situation. Is the public relations department conducting awareness campaigns for all drivers in Klang? What about imposing stiff fines for drivers who abuse facilities for the disabled?
Things became more confusing when I visited the MPK headquarters. There were only two parking lots for the disabled, and these were occupied by a bus and a trooper belonging to the local government.
Such “leadership by example” is probably the reason why the rest of the Klang folk refuse to take the rights of disabled seriously.
I attended a meeting in Petaling Jaya last week in which the heads of the Engineering, Planning, Building and Landscape departments came together for the first time to coordinate efforts to make PJ more friendly to all persons.
The committee’s top priority is to ensure pavements in the city which can be used by everyone, including the disabled, the elderly, and mothers with prams.
All the department directors in the PJ City Council have pledged to give top priority to disabled-friendly facilities. This means that all pavements that are currently being upgraded in the city will include disabled-friendly designs.
Residents living in PJS 5 and PJS 6 would have noticed that the pavements outside their houses have been fitted with guiding blocks for the blind and kerb cuts and ramps for wheelchairs, prams and people with walking aids.
Lastly, more than a dozen persons who used wheelchairs and walking sticks turned up for a meeting at a well-known hotel last week. They ended up having to control their bladders and bowels for more than three hours as the hotel was not wheelchair-friendly. There was a step leading to the restroom. The doors were too heavy to be opened or closed by the disabled. The cubicle to the water closet was not roomy enough for a wheelchair. Not being able to access the washrooms was torturous for the disabled as there was a free flow of beverages and snacks throughout the meeting.
A participant who was paralysed from the neck down developed a tummy upset which led to an unpleasant situation for him and his helper.
What was shocking was that the event was specially organised for the disabled, by the Government.
We were happy to receive an apology when we brought the matter to the attention of the authorities. But frankly, we are tired of repeating ourselves, especially on an issue that is so basic to all of us.

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Travel Smart

2010-02-04T23:44:00.000+08:00

Thursday February 4, 2010

Travel smart

WHEEL POWER
By ANTHONY THANASAYAN

SO you like to travel ... and you have epilepsy. That is no excuse for anyone to stay at home and avoid going to new places and meeting new people.
Serene Low, 49, from Bangsar, Kuala Lumpur, ought to know about these things. She has had nearly 100 episodes of epileptic attacks since she was a child. But that didn’t stop Serene and her family from visiting China last December.
A little slip-up made the trip an unforgettable nightmare for them.
“We were all excited about our holiday which we had been planning for months,” said Serene. “I went through our checklist twice to ensure that we had everything: passports, luggage labels, travelling itinerary, etc.
“However, after breakfast on the plane, I realised to my horror that I had forgotten to bring my anti-epilepsy medication.”
All she could find was a bottle of new drug which she had never taken before.
The drug was given to Serene by her neurologist who cautioned her to use it judiciously as a sudden change of medication could result in adverse side effects.
“I have not had any fits for over four years due to my daily medication. I was terrified that I might get one or several seizure attacks in China,” said Serene, an advocate for people with epilepsy.
“I had no choice but to take the new drug to avoid having an attack,” said Serene.
Then it happened on the second last day of Serene’s holiday. Serene fell onto the ground at a tourist spot. Fortunately, her husband and her son were with her when it happened.
They protected her head with her winter jacket and waited until the seizure had run its course.
When Serene came to, she was taken to a nearby coffeeshop to rest whilst a small crowd of curious onlookers watched the whole drama.
Serene later returned to her hotel room where she managed to get a good night’s rest.
Serene is thankful that she has a supportive family who are there for her all the time. Now all the wiser, Serene would like to offer the following tips to anyone who has epilepsy and likes to travel:
> Start first with your anti-epileptic medication before packing any item. And make sure you pack the right medication.
> Make an effort to recheck if someone has packed your medication for you.
> Never pack your medication into one bag to avoid not having them if your luggage gets misplaced at the airport. Have some available in your handbag and backpack as well for quick access. Carry extras in case you need them.
> Check the expiry dates of all medication.
> Always carry an identification card indicating you are a person with epilepsy, details of the type of medication you take, including dosage, who your doctor is, and important names and phone numbers to call in an emergency.
> Inform the travel guide that you are person with epilepsy so that he will be prepared to help you during an emergency.
> Mingle and get to know the people you are travelling with as a group. Share some simple information about epilepsy with them, particularly on how to help someone during a seizure.
> Stay close to your friends and family who are travelling with you.
> Keep a safe distance away from lakes, streams, fountains or waterfalls to avoid drowning during a seizure.
> Encourage your family or friends to take a video or photograph you during an attack as this provides useful material for your neurologist in treating you.
For more information on epilepsy, visit: www.epilepsylegacy.blogspot.com or e-mail Serene at shrine32002@hotmail.com.

Week of wins

2010-01-28T21:42:00.001+08:00

Thursday January 28, 2010

Week of wins

WHEEL POWER
By ANTHONY THANASAYAN

It was a fulfilling week tackling issue after issue.
LAST WEEK was terrific! The week started with a protest that I took part in with a dozen physically handicapped people in Kuala Lumpur.
We parked our wheelchairs (and walking canes) at the entrance of the Malaysian Anti-Corruption Agency (MACC) building.
We were mad over an incident in which a senior officer from the MACC had directed a mocking remark at a lawyer in a wheelchair about his handicap.
We were flabbergasted that anyone could think of uttering such a remark.
Whilst the senior officer in question may have thought that he was only directing his insult at one person, what he said ultimately applied to all disabled Malaysians.
In fact, it is attitudes like his that cause many handicapped Malaysians to stay locked up at home instead of coming out in our society.
As one of the organisers of the gathering, I was speechless at the press conference until a TV news reporter prodded me for comment.
All I managed to blurt out was: “If people can’t say anything positive about disabled people, then they ought to just keep their mouths shut.”
Someone in our group who was paralysed from the neck down asked the media if the senior officer in question would have made such a remark if he or any of his family members were handicapped?
We doubted it.
The prominent disabled lawyer that he had insulted was an able-bodied person until an accident not too long ago put him in a wheelchair. One would have thought that this would serve as a lesson to all that any one of us can be disabled at any time.
Whilst the senior officer offered an apology to the disabled lawyer, he didn’t do the same for the disabled community.
However, a swift apology was graciously given by the MACC chief commissioner Datuk Abu Kassim Mohamed in a letter the day after.
Speaking of graciousness, an unpleasant visit to a five-star hotel in Kuala Lumpur earlier, ended with a sumptuous lunch for 10.
Recently I went to a leading five-star hotel in Kuala Lumpur to attend a function. There I was shocked to find that the hotel lacked up-to-date disabled-friendly facilities.
I sent a complaint letter to the public relations department, and later brought a team of disability access experts from the Petaling Jaya City Council (MBPJ) to conduct an access audit of the building.
We discovered several facilities that were not up to the mark even though the hotel had regularly won awards for excellent services.
We found some ramps that were steep and washrooms that needed to be more wheelchair-friendly. The staff needed training on how to relate to disabled patrons.
The week ended on a more hectic note as I rushed to Klang to look into the complaint that dozens of dogs at the Klang dog pound were in bad shape.
The Klang Municipal Council (MPK) came under fire from a couple of animal NGOs which alleged that the council was mistreating the canines.
However, my visit with Selangor’s Canine Advisory Team (CAT) under MBPJ, together with representatives from the Department of Veterinary Services, showed a different picture.
The MPK had introduced a number of positive changes like setting up a pound a year ago and buying a proper van – rather than using a lorry – to catch and transport stray dogs.
There is plenty of work for the MPK to do to improve the condition of the animals under its care, and the staff entrusted to look after the canines needed education on how to go about doing it.
Immediate measures were being taken to improve the situation. One of the positive changes is the setting up of a CAT committee under MPK to look into canine issues. CAT is scheduled to have its first meeting this morning.

Wheel Power Malaysia

How To Train A Dragon

Thursday January 26, 2012

How to train a dragon

Wheel PowerBY ANTHONY THANASAYAN

Thursday December 29, 2011

Looking back

Wheel Power by ANTHONY THANASAYAN

Awkward Moments

Thursday November 3, 2011

Awkward moments

WHEEL POWERBy ANTHONY THANASAYAN

Talking Point

Thursday October 20, 2011

Talking point

Wheel Power by ANTHONY THANASAYAN

Disabled And 2012 Budget

Thursday October 13, 2011

The disabled could do with more help

WHEEL POWERBy ANTHONY THANASAYAN

Big Shift For Disabled

Thursday September 15, 2011

Council appointments a big shift for the disabled

WHEEL POWERBy ANTHONY THANASAYAN

Away with barriers

Away with barriers

WHEEL POWERBy ANTHONY THANASAYAN

Father's Day blues

Thursday June 16, 2011

Father’s Day blues

WHEEL POWERBy ANTHONY THANASAYAN

Count us in

Thursday June 9, 2011

Count us in

WHEEL POWERBy ANTHONY THANASAYAN

Dayspring brings out the best in the disabled

Thursday June 2, 2011

Dayspring brings out the best in the disabled

WHEEL POWERBy ANTHONY THANASAYAN

Zhar's zest for life

Thursday May 26, 2011

Zhar’s zest for life

Wheel PowerBy ANTHONY THANASAYAN

The face of love

Thursday May 19, 2011

The face of love

Wheel PowerBy ANTHONY THANASAYAN

Windows Of Opportunity

Thursday May 12, 2011

Windows of opportunity

WHEEL POWERBy ANTHONY THANASAYAN

New Kid On The Block

Thursday May 5, 2011

New kid on the block

Wheel PowerBy ANTHONY THANASAYAN

Spare them a thought

Thursday April 28, 2011

Spare them a thought

WHEEL POWERBy ANTHONY THANASAYAN

Game for more

Thursday April 14, 2011

Game for more

WHEEL POWERBy ANTHONY THANASAYAN

Attention to detail

Thursday April 7, 2011

Attention to detail

WHEEL POWERBy ANTHONY THANASAYAN

Changes is in the air for people with disabilities

Thursday March 31, 2011

Change is in the air for people with disabilities

Wheel PowerBy ANTHONY THANASAYAN

Up the garden path

Up the garden path

Up the garden path

At last, a forest reserve with disabled-friendly facilities.

Gentle Giants

Thursday March 17, 2011

Gentle giants

WHEEL POWERBy ANTHONY THANASAYAN

Give due respect to the disabled

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