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.

The aNt

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

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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

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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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