I met a real-life Santarina

Someone once told me that teachers are often remembered most by the kindness they show to their students, rather than the knowledge they impart to them.
 

If that's true, then it must also apply to hospitals, doctors - and especially nurses.

There is this one particular nurse who always comes to mind whenever I think of hospitals.

And although it has been nearly 45 years since I last saw her, it still feels as if my encounter with her was only yesterday.

I had been in hospital for nearly three months. I was only a boy of ten, then.

The doctors had put a plaster cast on me, from my chest right down to my foot. This was after a surgery which proved to be a total failure on the surgeon's part.

I was completely bedridden. I could not sit up but had to lie flat on my bed. I could not even turn from one side to  the other without the nurses' help owing to the weight and size of the cast.

During the length of my stay, I had to suffer the humiliation of having a bed pan and urinal brought to me in order for me to answer the call of nature.

It isn't difficult to imagine how a boy my age could quickly get depressed in the paediatric ward.

I felt that my family had betrayed and deserted me in the hospital even though they did come to visit. The surgeon who had performed the operation hardly had time to speak to me whenever he came over during his ward rounds.

I longed for at least a few moments with him. I wanted to know from the horse's mouth why I had become permanently paralysed after the surgery - and what I was to do with my life from then on.

But he continued to avoid me. When he did come by for a brief moment or two, it was always he who did the talking. I was forced to do the listening and swallow all my questions.

I continued to lie there on my bed. I could only see the ceiling fan spinning around and hear the sounds of the other patients and medical staff going about their business in the ward.

I became so frustrated that I threw the jigsaw puzzles and toys at the volunteer visitors who came by twice a week to spend some time with the patients.

And then came Nurse Smith.

She was a foreigner who was temporarily in the ward as part of an exchange programme.

Smith was the only nurse who cared enough to talk about my feelings as she attended to me.

One day, she noticed an unopened gift on my locker.

I told her it was a great battery-operated toy buggy which a relative had bought for me that day.

"I was told that it not only comes with flashing lights but it has a system that would make the motorised object turn around and go the other way when it bumps into things," I explained.

My relative had also said that because of the position I was in, I should wait until I got better and went home to test it out. "Besides, the hospital wouldn't allow you to operate it here," the relative had added.

"I have an idea," Nurse Smith said with a twinkle in her eye. "I'll see you later when my shift is over."

As promised, Nurse Smith turned up at 10.30pm.

Much to my delight, she helped me open my present.

My face just lit up like a Christmas tree the moment I saw the beautiful buggy car.

She then took out a fresh pair of batteries which she had bought and inserted them into the toy.

Nurse Smith carried the car up to my face. After allowing me to touch and inspect the car charged with its electronic capabilities, she put it on the floor.

Sure enough, it had a reflex action which made it turn around in another direction when it bumped into objects like my hospital locker, the wheels of my bed and the movable stand tray.

Although I could not see what was happening, Nurse Smith gave me a "running commentary" of the scene. Her voice slowly turned louder and louder until the buggy was halfway across the ward from where I was!         

After about 15 to 20 minutes or so, she picked up the toy and placed it back in its box. "It's time to let the other patients sleep," she told me with a big smile.

I was so happy that she had taken the time and trouble - as well as defied the hospital's rules for a moment - to let me enjoy my relative's present.

Needless to say, we became chums after that.

Nurse Smith would pop by each time after her duty was over to have a chat with me.

Even though she didn't have the answers that I was looking for from my doctor, she took time to listen to a 10-year-old boy's anxieties and fears about growing up as a person with a disability.

Nurse Smith had to leave the hospital and the country after a few weeks. I never saw her again.

But she had left only after being the best Santarina that any boy could have met in a lifetime.

An unpredictable and disabled condition

An unpredictable and disabling condition -Anthony Thanasayan

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Created on Thursday, 18 December 2014 07:00

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Written by Anthony Thanasayan

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Multiple Sclerosis - or 'MS' in short - is a disease that most people are scared about.

That is because it is an unpredictable, and often, disabling condition of the central nervous system.

It not only disrupts the flow of information within the brain, but also between the brain and the body - causing the body to go haywire.

Because MS is a complex disease, every person's experience of it is different.

Some experience vision loss, problems with balance, itching and more. Others have pain or numbness which can lead to serious paralysis.

More women are affected by MS than men.

The first symptoms often start between the ages of 20 and 40. Most people with MS have attacks - also called relapses - when the condition gets noticeably worse.

They’re usually followed by times of recovery, when symptoms improve. For others, the disease just gets worse over time.

There is no cure for the condition, only treatment on how to manage the symptoms by preventing relapses and slowing down the effects of the disease.

Although MS is common in Western countries, it is rare in our part of the world.

An estimated one or two for every 100,000 population in Malaysia have the condition.

One Malaysian, who knows MS well, is 37-year-old Keshvinder Kaur. She hails from Subang Jaya in the state of Selangor.

"Kesh", as most of her friends call her, knows about MS because she has the disease. She was diagnosed with it in 2004, a decade ago.

MS changed her life drastically.

Her symptoms began first with numbness in her legs. She also had problems in balancing herself resulting in falls. She also had incontinence and, most of all, fatigue.

"I found myself strangely tired all the time," Kesh told me over a chat session last week. The constant attacks on her nerves and body made her unable to walk properly.

She had to depend on a walking aid. 

Today, Kesh is in a wheelchair.

Funnily enough, Kesh pointed out, it is more of a positive thing rather than a negative.

"Somehow, I find myself to be more active and less tired compared to before. It’s all in the mind," she laughed.

Kesh said she is never happier than when she has the opportunity to be in the company of people like herself.

She did exactly that, last weekend.

Kesh attended a family day event with some 50 persons suffering from MS, and with their caregivers tagging along. It was held in Petaling Jaya last Saturday.

"It was not a 'typical reaction' that the 'uninitiated' would imagine at an MS gathering," explained a beaming Kesh.

"The moment anyone stepped in, they were greeted by a busy, chattering and laughing crowd.

"Everyone was moving around and pampering themselves, meeting new faces, catching up with old ones, and simply having a terrific time.

"For the MS patients who find themselves stuck at home for most of the time, it was a godsend to get out of the house for a while.

"The few of us, like me, who 'turned up' in our wheelchairs, were delighted that the organisers had made it a point to have the event in a wheelchair-accessible venue.

"So this was a good opportunity for us to come together and break away from our regular routine and enjoy ourselves!" added Kesh.

Kesh went on to point out that whilst all the group had to do was have fun at the half-day event, which ended up with a hearty lunch, a serious talk on health was also part of the agenda that morning.

It was presented by a clinical psychologist, the guest speaker for the day.

"The topic was quite bizarre, and at the same time, most interesting: 'Mental Hygiene'!

"Most of us had never heard of such a term. However, we were all impressed with how the speaker managed to encourage us - whether disabled or able-bodied - to get rid of all the negative thoughts in our minds.

"He then went on to inspire us to rediscover our true selves in order to realise who we really are as individuals and humans.

"At first, it was confusing. However, as the talk progressed, we got a clearer understanding of what the speaker was driving at - a positive mind complements a healthy body."

After the talk was when the FUN part began.

A clown showed up and soon left the kids and adults in stitches with his antics and jokes.

"The adults forgot themselves for a few fleeting moments and ended up with balloons in their hands, beaming from ear to ear just like the kids - including me!" said Kesh.

"We were all practising the 'good mental hygiene' thingy by being happy and positive - and most important of all, staying on top of MS always!" concluded Kesh.

Last Saturday's event was organised by the Multiple Sclerosis Society of Malaysia. To find out more about MS, please visit its Facebook page:

http://on.fb.me/1xrlHvK

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A long, long way to go for the disabled in Malaysia

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Created on Thursday, 11 December 2014 08:18

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Written by Anthony Thanasayan

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Last week, more than one billion of the world's population of disabled people - now billed as the largest minority group in every society of the globe - celebrated 'International Day of Persons with Disabilities' (IDPD).

This was on December 3.

Two major local events were held during the same time, in conjunction with the international occasion.

They left us as disability advocates with plenty to think about, when they were over.

Especially so, in the area of improvements and priorities, when someone decides to organise an event involving disabled persons.

Here are the 'high and low' points of both occasions, followed by what can and should be done in future, to improve such events.  

1) The IDPD celebration organised (amongst others) by the National Welfare Department (JKM) and the Seremban Municipal Council of Negeri Sembilan (MPSNS):

 Great part: Spreading the IDPD cause outside KL 

This was a most positive effort by JKM. The IDPD message of disabled welfare and rights badly needs to be heard in every state of the nation, instead of frequently in KL and Selangor alone.

Kudos to JKM for holding the event in the MPSNS. This will certainly inspire the municipality there to do more in terms of accessibility for its disabled residents.

It will also likely have a snowballing effect in other states, so that more disabled people and local councils in the country can be empowered through IDPD's events.

By the way, this is not to say that JKM has never held an IDPD occasion outside Kuala Lumpur. It has.

But the point is it should now start holding many more in every other state, before returning to the capital city.

Bad part: Wheelchair users' needs sidelined 

With more than 2000 people attending the whole-day event (the exhibition was from 8.30am and the official ceremony, in the afternoon,), more consideration should have been given to the physically disabled. Regretfully, not so.

At least ten members of the Independent Living and Training Centre, Malaysia (ILTC) from Rawang, Selangor, who came in wheelchairs and had walking difficulties, complained about it.

They said that, unlike that provided for the VIPs, not a single car park was reserved for disabled drivers next to the venue.

In fact, they could not find any wheelchair-logo car parks anywhere! So, the handicapped guests had to park outside the council hall and compound.

Some even had to park their vehicles a kilometre away. From there, they were forced to wheel themselves up and down the steep slopes on the way to the venue.

Some of the others had tried to park inside the compound of the council but were promptly shooed away by the police. This caused unpleasant arguments to erupt - the last thing that anyone would want to experience on a day of celebration.

Inside, they experienced further barriers.

Physically-handicapped guests had no access to all the activities that were going on, simply because their wheelchairs was unable to get near them.

They had no choice but to sit in a restricted corner and watch the events going on in the council's open field. It was no fun being spectators instead of active participants.

The toilets for the disabled were at least 500 metres away. No volunteers had been designated to help in pushing the wheelchairs that distance.

At least a couple of disabled women even fell off their wheelchairs. This was because of the poorly- constructed ramps in the hostile environment.

"It was clear the organisers didn't go all the way to think about our needs. They were obviously more interested in seeing to the able-bodied VIPs' convenience, rather than ours," lamented Francis Siva, president of the ILTC.

"How could it be a called a 'celebration' for us when we suffered so much - especially driving all the way that day for about 180 kilometres from Rawang to Seremban, and then, having to head back home again?" he added.

"To make matters worse, the disabled senator who uses a wheelchair was notably not present to witness what was happening on such an important occasion as the IDPD," Siva concluded.

  

2) The Fifth Asia-Pacific Network for Accessible Tourism jointly organised by the Petaling Jaya City Council (MBPJ) and Beautiful Gate Foundation in Selangor:

Great part: Definitely a most worthy event                                                                                                                                                 The event featured top global authority speakers on universal designs that included disabled persons in everything. 

With more than 20 countries participating (UK, Jordan, India, Philippines and more), this was an excellent opportunity for Malaysia to meet and see how nations and societies the world over are rushing and working against time to prepare themselves for the increasing population of elderly persons, who will have one type of disability or another.

It was also a terrific chance for MBPJ - with several international and local awards on disability access and projects behind them (the latest one from Seremban's IDPD 2014 event) - to showcase their achievements, which they did at ICAT during site visits.

I heard the overseas delegates were pretty impressed with what they saw. Some of them commented that PJ had "outdone" some of the local councils in their own countries, in terms of the blind and wheelchair accessibility in parks.

Bad part: Poor crowd and mostly the wrong audience 

The key persons, such as representatives from the Tourism Board, government officials, local councils, hotels, architects, developers, simply weren't there to take in all the valuable information. 

They also missed, in particular, finding out about the latest state-of-the-art adaptable designs and facilities used in other countries.

Their presence was absolutely critical if things are to significantly change in the quality of life for all disabled persons in the country.

Petaling Jaya was also, perhaps, not the best choice for a pivotal event like this. KL would have been a better venue for far-reaching results.

The audience, in the end, other than the international participants, was largely made up of local and ordinary disabled persons and able-bodied volunteers, people not in positions of authority to bring about changes.

One participant observed that it was a more "daycare centre-like" event, than anything business-like or professional.

Finally, and curiously, the international delegates of ICAT were brought to a session of a local animal rescue adoption programme that featured a couple of paralysed canines on wheels, purportedly "to celebrate IDPD".

If true, I'm seriously puzzled by this.

What have handicapped dogs got to do with disabled people, other than the obvious fact of trying to get sympathy from the public in order to fill up the coffers of the NGO for animals?

Or is there a new disability-advocacy movement somewhere which I don't know about, to also champion "wheelchair access" for dogs with disabilities at airports, train stations, hotels and tourist spots?

Whatever the case, the painful truth is that human beings who are disabled have still light years more to go for ICAT's noble vision to become a reality.

    

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'Roving Angels' help in AIDS awareness campaign

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Created on Tuesday, 02 December 2014 15:04

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Written by Anthony Thanasayan

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More than 10,000 shoppers who patronised two of Kuala Lumpur's hottest public venues in the city last Saturday - Nu Sentral and KL Sentral Station - unexpectedly found themselves learning more about HIV and the deadly disease AIDS.
   
Rather than it being a scary occasion, shoppers from all walks of life, including people with disabilities, were pleasantly surprised to enter a happy, carnival-like mood and atmosphere, which made the whole experience fun and engaging. 
Close to 100 dedicated volunteers called ‘Roving Angels’ approached curious shoppers and onlookers with their message of hope.
Another hundred stayed put in their special booths or were seen running around to ensure that the event kept its momentum.
Each shopper received a red ribbon by a Roving Angel to announce the celebration of World AIDS Day on Dec 1.
Others were invited to support the ongoing work with HIV and AIDS.
Quite a few preferred to make a donation; others decided to make an appointment in order to get themselves tested for HIV and AIDS.
Soon, the shoppers and travellers in the shopping mall and train station became more visible with their purchase of red ribbons, flyers and other merchandise.
They wore them to show the public that they were against discrimination of people who have the disease.
The brainchild of the event, 'Wishing for Zero (in new HIV infections in the future)' was the PT Foundation - a KL-based, non-profit, community-based organisation aiming to provide information, education and care services relating to HIV/AIDS and sexuality in Malaysia.
It featured a full day of activities from 10am to 8pm. There were information booths around the mall to offer accurate and comprehensive information on HIV and AIDS.
Members of the public were also given the opportunity to obtain free vouchers for fully-confidential tests for HIV and other sexually-transmitted infections by taking part in HIV quizzes. 
The launch, which was held at midday, was sponsored by CIMB Foundation. They presented a mock cheque donation of RM107,400 during the ceremony.
Speaking to the crowd, PT Foundation Chairman Hisham revealed that there were "more than 80,000 (Malaysians) with HIV in the country".
"We stand (united) in solidarity (with them)," he added in his spirited speech.
"For more than 25 years, PT Foundation has been working on the front line in the fight against HIV and AIDS in Malaysia," Hisham went on.
"The good news is that in the past ten years, we have seen a decline in new HIV cases in the country.
"In a decade, the number of new infections annually has been halved - a major achievement as a result of years of commitment, bold decision-making and solid funding."
The PT Foundation's chief, however, pointed out that the encouraging news did not mean that there was no reason for concern.
"The bad news is that the fight is not over," he cautioned.
"While Malaysia has been successful in combating the virus through bold and effective harm reduction programmes which distribute clean needles and provide methadone therapy, it has been less effective in addressing sexual transmission of HIV. 
"Every day about 10 Malaysians test positive for HIV and more than 70 percent of all new infections have occurred through sexual transmission."
Emphasising the need for undergoing an HIV test, Hisham said it is the only way to find out if a person is infected with the virus or not.
"Most Malaysians do not talk about HIV or AIDS. Those living with HIV and who do not know it are infecting other people with the disease.
"Nowadays, for every four men newly-infected with HIV, one woman is infected.
"In 2013, 34 percent of new HIV infections were reported in young people between 13 years and 29 years of age.
"This is an alarming trend and we need to do more to turn the tide. We need to aim for zero new infections."
Hisham said the HIV epidemic presents new challenges which require renewed commitment, courage and vision.
"Malaysians get infected with HIV every day. The epidemic is not yet over, and more work needs to be done," he concluded.
Other VIP representatives at the weekend launch included the World Health Organisation to Malaysia, Brunei Darussalam and Singapore, the Malaysia AIDS Council, Durex Malaysia and Singapore and Group Retail Asset Development.
For everyone at the event, the message, although stark, was poignantly urgent: the fight against HIV and AIDS can be won.

It's tough for Marina, aged 12, with HIV

LIFE is not easy, whether you are the one with HIV or AIDS or whether you happen to be a caregiver to somebody who has the disease.

It gets worse when it becomes complicated. Marina is 12 years old. She is a person with a disability.

She is a slow learner and has trouble with all her subjects in school. Because of her inability to sit still and concentrate (hyperactivity), she had to be moved from a regular school to one with teachers trained to deal with children having learning disabilities.

The environment there was much better than in her previous one.

In her new place of learning, Marina is taught more living skills and does not just sit in a classroom. She is learning basic social skills, ranging from learning how to cook to how to swim.

That, however, has not taken Marina's problem away. She is still a child who faces difficulties in understanding things. Marina's mother, Azizah, had severe problems of her own too, when her daughter was born.

She was an 'injected drug user' - a term used to describe a person who uses drugs through injection. At that time, it was obvious to the authorities that Azizah was not in a position to look after Marina. Azizah herself, by the way, was an adopted child.

So a relative in the family named Khatijah, 55, decided to take in the baby and give her all the love she needs. The adoption has not been formalised to this day.

It is something Khatijah wants to do.

And according to her, until she does, she will not be able to claim welfare assistance for the child from the government.

Marina is HIV-positive, although she does not know it.

She got it from her mother who died of AIDS when she was two years old. Her father also had AIDS and passed away when Marina was just about to turn six.

The HIV status of Marina has, fortunately, not dampened or deterred the love and spirit of Khatijah for Marina in any way.

In fact, all the more reason Khatijah looks out for the child as if she were her very own. Cuts and bruises on Marina are treated promptly by the doting Khatijah, who insists that the affected areas are washed and bandaged at once.

On the doctor's advice, Marina's HIV status is also kept a secret for fear of discrimination.

Marina's teachers and the rest of the children do not know about her condition.

In fact, whenever the child asks Khatijah what her medication is for, Khatijah has to resort to telling white lies that the pills are for her leg or hand or some other problem.

Because Marina was a premature baby, she does have recurring medical problems. She misses school at an average of at least seven days in a month.

That's because Khatijah ensures that she doesn't miss even one of her doctors' appointments - for orthopaedic, neurological, eye and even psychological issues.

Khatijah,  a 'single mum' to Marina, admits that sometimes she does go overboard in her care and concern for the child.

Her "overprotective attitude" at times takes her literally everywhere her child goes. This, she realises, is not good for Marina.

Khatijah can't help becoming overbearing. She says she gets possessive and angry about who meets and talks with Marina.

But there are some good aspects too.

Khatijah says by caring for Marina, she has learnt a great deal about HIV and how to care for someone who has the condition.

This includes never missing one's medication, being aware and alert of side-effect symptoms from the drugs and what to do next.

Then, there are also those moments of frustration which occur when education is needed on how to respond - rather than react negatively - to people with HIV.

The fear of HIV and AIDS is particularly difficult to overcome and Khatijah relates something that happened between her brother and Marina.

Since her close relatives are aware of Marina's status, Khatijah's brother, in particular, used to have hang-ups about Marina touching and using the cups that others use to drink, and he wanted instead a 'special cup' for her to use.

He even went to the extent of throwing away a whole jug which Marina had used to pour water from.

The most positive programmes which Khatijah has found beneficial are the ones where people from all walks of life can meet and share their experiences about HIV and AIDS - including those for caregivers of those affected by the condition.

These range from having support groups and activities to financial assistance regarding school supplies, medical treatment and transportation.

On another note, in commemoration of World AIDS Day on Dec 1 next week, PT Foundation is organising a public carnival with the theme: 'Wishing for Zero HIV and AIDS'.

It will be held in Kuala Lumpur at the Nu Sentral Shopping Mall at Jalan Tun Sambanthan, and the Kuala Lumpur Sentral Station in Jalan Travers this Saturday, Nov 29, 2014.

The purpose of the event is for everyone to come together for a fun-filled day of activities, and at the same time learn about what safe and responsible sex is all about.

Programmes begins from 11am onwards.

For further details, please go to: http://ptfmalaysia.org/v2/social-campaigns/world-aids-day/

Also make a date with 'The RED Show', featuring the dynamic duo Rozz and Meilin on Nov 30 and Dec 7 in Kuala Lumpur - a fundraiser in aid of the PT Foundation's Community Health Care Centre.

Showtime: 9pm - 11.30pm.

For further details on how to get tickets and more, go to: http://ptfmalaysia.org/v2/social-campaigns/revel-in-music-with-rozz-and-meilin-for-a-worthy-cause/

PT Foundation is a KL-based non-profit, community-based organisation aiming to provide information, education and care services relating to HIV/AIDS and sexuality in Malaysia.

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The Day of the Lizard

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MY LATE and favourite grandmother - the wise woman that she was - used to caution me about the perils of befriending or entertaining guests - especially those with forked tongues.

And mind you, she had no qualms about her remarks - referring to both the animal and human species!

However, I must admit though, that tongues do not get any longer - and scarier - than those belonging to monitor lizards.

So you can imagine what an extreme bundle of nerves I was last week, when one of these four-footed, clawed monsters wriggled into my bedroom!

With three dogs - an adult Dobermann, German Shepherd Dog and a Shetland Sheepdog - and I in my wheelchair at one end - and the terrible lizard at the other, it didn't have to take a rocket scientist to conclude that the place just wasn't big enough for all of us.

So what does a handicapped man who can't walk at all do in such a predicament?

Here are some "hands-on notes" which I took as the drama unfolded.

First, who's the victim here? And don't panic.

A Reader's Digest article years ago pointed out to anyone being confronted by a snake to "realise first that it's more scared of you than you are of the creature".

It went on to suggest to "be calm and then walk away from the serpent so that you can allow it to make its escape as well in a non-confrontational way".

Of course, in my case, this wasn't a snake - although it pretty much looked like one to me - with its "sporting legs" and length of almost a metre. 

And I wasn't in the great outdoors somewhere where one would have expected such a rude encounter.

Excuse me, but the dreaded thing was in my room, with the doors all shut except that of the bathroom from where the slithery visitor had emerged.

(I later found out that the monitor lizard had crawled in through my attached bathroom's pipe outlet because of a major drainage construction work that was going on outside my house).

Luckily for me, I decided to stay as calm as possible as I reached out and grabbed an old walking stick next to my bed for some form of protection - in case the lizard decided to lunge forward in my direction.

My next action was to get my dogs quickly and safely into their personal crates to prevent them from getting to the unwelcome 'roommate'.

I know anyone in my situation would have set the dogs on the monitor lizard.

Although my canines were very capable of doing that, and in fact were only waiting for the "go ahead" from me, I instructed them all to get into their separate crates at once.

Despite being petrified of the slimy creature, I couldn't help feeling sorry for it, for I realised that it was just as scared as I was.

And what if it had a family of mum and dad, or brothers and sisters, who were, at that very moment, worried sick that it had not come home?

For all I knew, it was also probably praying to the Giant Lizard Upstairs for a way out of the mess that we were all embroiled in.

Thank God for mobile phones, best friends and reinforcements

I reached out to my cell phone (service providers here, please note how hand phones are our life support as wheelchair users) and had my best pal Andrew Martin on the speed dial within seconds.

Andrew, who was at work, was over in my house within the longest 15 minutes that I had ever experienced in my life.

However, when he saw the monitor lizard, he got all jumpy and nervous too. 

(Psst! Please don't let this part about good ol' Andrew get out, as the last thing I want to do is to embarrass a great friend.)

We decided to call for more help. Andrew left me for a while and went outside to call the workers at the construction site to give us a hand with Mr Lizard.

"But strictly 'no kill', please," we insisted. "And certainly not as a tasty ingredient in someone's soup pot for supper," we added.

When the workers - a couple of young foreign men - saw me in my wheelchair, they offered warm smiles and immediately went down to business with a sense of urgency.

With some knocking on the wall, and the table with long sticks - and my dogs putting up quite a din with their ferocious barking - the monitor lizard finally decided it had had enough of the inhospitable treatment that it had been getting.

What I initially thought was a lazy and sluggish creature suddenly bolted out from under my table, room and house, took off at lightning speed and was never seen again.

No one was hurt. Nothing, broken. And no one was happier than I to know that everything was all right with the world again.

Thanks to best friends, good people that we befriend each new day, who are always willing to lend a hand when you need it the most.

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Deaf to the needs of the disabled

Deaf to needs of the disabled -Anthony Thanasayan

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Created on Thursday, 13 November 2014 07:00

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Written by Anthony Thanasayan

Category: Columnist

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I AM THE KIND OF PERSON that most advertisers probably hate.
And I don't blame them.
I rarely pay attention to any of their promotions whenever or wherever they appear in the printed media or on air.

Commercial breaks, especially on TV, are to me simply the best excuse to go and grab a snack from the refrigerator, or to attend to that unyielding call of nature, before I make a quick dash back in my wheelchair to stay glued to my favourite shows.
Last week, however, wasn't quite the norm.
I was just about to head for a sandwich break during my favourite 'Marvel Agents of Shield' series on Astro when an unusual advertisement caught my eye.
It was about a young couple lying in bed and looking totally miserable on a bright and shiny morning!
And it wasn't until they began to communicate with each other that I realised they were both Deaf - or so I thought.
The guy was asking the girl  - all in sign language - what she had dreamt about and what she wanted to do together as a couple later on in the day.
Although I am no expert, though I took sign language classes years ago, I could tell that their hand signs were, for the most part, accurate.
Up to this point, I must say that I was pleased that the advertisers were using Deaf people - or at least helping to promote sign language in a positive way.
However, little did I realise what was to happen next.
All of a sudden, the guy sits up and starts speaking through his mouth to the girl!
She vocalises her reply to him too.
It turns out that neither of them is hearing-impaired in the first place.
They were only scared to open their mouths because of bad breath.
That is why the couple resorted to using sign language with each other.
The lovers were trying to protect each other from something unpleasant.
To make matters worse, the background tune played during the sign language conversation was a dull and rather melancholic one.
However, after using the new 'Dentiste' toothpaste - the company that  created the advert - the couple automatically enjoyed fresh breath, and thus had no need to communicate in sign language any more.
Yogeswari Veerakathy became Deaf when she was 10 years old. She is in her forties now. A lecturer for Deaf students in a private university, she was quick to comment about the advert in her Facebook page:
"What exactly are they (the advertisers) trying to say? Sign language is for those with bad breath? How very insensitive of them (to portray the Deaf community in this way in their commercial).
"(Resorting) to using sign language (just because people) have bad breath is plain silly. I didn't like the way the ad made fun of sign language and took it so lightly (so much so) that those who watch it will (only end up) laughing (at Deaf people).
"Sign language is considered the mother tongue of Deaf people (in Malaysia and around the world) so obviously the community will be offended when (anyone tries to poke) fun at it. It's like saying those who use sign language suffer from bad breath.
"Advertisers should practise the highest level of sensitivity towards people with disabilities. They should be educated about the fact that sign language is a beautiful language used by the Deaf worldwide and it is a powerful tool of communication for them.
"There is also an increasing number of hearing people who learn sign language professionally in order to communicate with the Deaf in their families - as well as to make friends with Deaf persons," concluded Yoges.
Instead of portraying the Deaf in Malaysia in such a negative light, here are some quick positive steps that the promoters can take if they want to involve Deaf people and their issues:

• Being Deaf does not restrict the individual to a medical definition such as one's inability to hear. Deafness is now being regarded as a whole culture and brand new living for the Deaf, hence the term is now spelt with a capital 'D' instead of a lower case 'd'. There is a distinct difference. In view of this, advertisers should use real Deaf people in their commercials instead of those pretending to be one.

• Deaf people are not looking for cures nor do they dream all day about being able to hear. In fact, they are not interested in it at all. They would much rather that the hearing world learn sign language and enter into their "silent world" in order to know more about them.

• Deaf people have rights - so do away with depressing tunes and music. These only elicit sympathy, which doesn't help. They don't need anyone's sympathy but support. Give them equal opportunities in employment. Provide sign language interpreters in office conferences, trainings and in every meeting involving the Deaf. Pay them the same wages as hearing staff. Provide close captioning subtitles on television which gives all the details of what hearing audiences are able to hear in audio and visuals such as background noises in addition to what is being said.         

Actually, the advert wouldn't have been so bad had it included some of the  facts about the Deaf community in a footnote in the promotional, as part of the company's corporate social service thingy.
And as for bad breath, guys, we all know, don't we, that that nasty can be caused by a whole lot of health issues.
It is best that you seek proper professional medical evaluation instead of naively resorting to any magical toothpaste solution.
I think I'll pass that argument over to the dentists who know better.

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No walk in the park, but what fun!

No walk in the park, but it was intense fun -Anthony Thanasayan

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Created on Thursday, 06 November 2014 07:00

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Written by Anthony Thanasayan

Category: Columnist

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A PICNIC IN THE PARK idea sounds like great and wholesome fun for the entire family.

However, when you organise something like that, and invite people with disabilities to tag along, the excitement only gets more intense.

That is exactly what a total of 66 families did - and, pleasantly discovered - when they decided to celebrate 'World Cerebral Palsy (CP) Day' on October 11, last month.

As a result, the event held at Taman Tasik Titiwangsa in Kuala Lumpur turned out to be an extraordinary affair for people with disabilities and their caregivers.  

World CP Day is annually observed on the first Wednesday of October.

This year, the special day fell on October 1, Wednesday, but the organisers of the event - 'Malaysian Advocates for Cerebral Palsy' or 'MyCP' - decided to move it to a week later.

They held it on a Saturday in order to draw in more people.

It was clearly a good decision, considering the fact that more than 500 participants turned up for the half-day session which started at 8.30am and finished just before lunchtime.  

In addition to adults with physical disabilities and children in wheelchairs and their families, others present included healthcare professionals from a variety of backgrounds.

There were doctors, therapists, lecturers, students, volunteers and even a celebrity chef to show their support.

Cerebral palsy is a physical condition involving the permanent tightening of the muscles caused by damage to the brain around or before the time of birth. 'Spastic' is the former term used for persons with CP.

The event was declared open by Datin Paduka Dr Tunku Taayah, a private medical consultant involved in the work of rehabilitation of disabled persons.

Dr Taayah brought the crowd up to speed on the many challenges faced by individuals with CP in the country today.

These include the importance of maintaining good health, keeping abreast of the latest developments in CP and finding a job in order to be self-supporting.

She also mentioned that local authorities need to urgently create a disabled-friendly environment. This is to help disabled Malaysians to integrate with the rest of society.

The rehabilitation specialist stressed that parent caregivers of disabled children need to work with the government and non-governmental organisations (NGOs). They also need to work together with healthcare professionals so that their children suffering from CP can have a higher quality of life.

"The spirit of our event was to highlight the fact to everyone that children with CP possess the same desire and passion as any non-disabled children," pointed out Dr Sazlina Kamaralzaman, the chairman of MyCP - a two-year-old NGO presently based in Klang in the state of Selangor. (MyCP will be moving to Bangi, Selangor next month).

"Since one of the key issues for children with CP is constantly trying out evolving, innovative inventions which enhance the children's ability to perform daily tasks, MyCP took the opportunity to invite Polytechnic Sultan Salahuddin Abdul Aziz Shah in Shah Alam to introduce its specially-designed chair for children with CP. The invention helps them to sit down with special support whilst performing their activities," added Dr Sazlina.

It was developed as part of the students’ project in the wood-based technology unit of the polytechnic, she further explained.

Dr Sazlina, who is lecturer at the School of Rehabilitation Sciences in the Faculty of Health Sciences at University Kebangsaan Malaysia in Bangi, stressed that the Picnic in the Park event would not have been achieved without the support of parents who have children with disabilities.

"The hard work put in by the parents who are committee members of MyCP was remarkable.

"It began with a humble idea from a mother to invite fellow committee members for a picnic at the park, potluck items included, and to use balloons to raise awareness about our work in MyCP.

"We shared it with a few other friends and the idea simply spread like wildfire. Soon, everyone in our Facebook wanted to join our cause, including first-time visitors."

Dr Sazlina pointed out that the idea of celebrating together with children and adults with CP - and creating a bond between parents with disabled children and other parents by giving them an opportunity to come together at a big and happy occasion - created a lot of positivity.

She said that they knew of two mothers who had come with their disabled children from as far as Miri in Sarawak, just to enjoy the celebratory atmosphere, and they realised they no longer had to hide their children just because they had disabilities.

"Although we managed to take a lot of pictures that special morning and captured the moments, it was nothing like being there yourself to take in everything!" concluded Dr Sazlina.

For more information on the work of MyCP, please visit it on Facebook at the following address: https://www.facebook.com/mycpmalaysia

The aNt.

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