The brother I never had – Breaking Barriers – The Borneo Post – 16 August, 2014

The brother I never had
by Peter Tan. Posted on August 16, 2014, Saturday

THE many nooks and crannies away from the oft-trodden paths in the village were perfect playgrounds for my childhood escapades with the neighbourhood kids.

These were also places where unseen hazards lurked. Zinc sheets, glass shards and all sorts of sharp objects thoughtlessly discarded would lie in ambush among tall grass and shallow garbage patches.

It was in one of these nooks that I tripped and fell. Pain instantaneously shot through my left leg. The sharp edge of rusty barbed wire had pierced into my knee. I did not tell my mother for fear of being reprimanded.

By the next morning, my leg was swollen and tender to the touch. I lumbered around with a very apparent limp. The swelling throbbed. I sobbed quietly at the discomfort.

My mother had a look at the wound and decided that it needed immediate attention. I was six years old then, too heavy for her to carry. She got my cousin Peter, who was temporarily staying with us, to help.

He took half day’s leave from work and carried me the entire 1km from the house to the bus terminal. The journey to the medical hall by bus took about 10 minutes. The pain was becoming intolerable. Peter consoled me all the way there.

I cried out loud when the Chinese physician pressed on the area surrounding the wound. He went to the back of the medical hall, came back with a black gooey paste, spread it over my knee and wrapped it in a bandage, oblivious to my protests of pain.

The swelling and pain subsided after a few days. It was a wonder I did not get tetanus for not having the wound properly treated by a doctor. Nevertheless, I was soon scampering all over the village again, my mother’s threat of using the rotan if I ever went playing in those places was conveniently forgotten.

That is the earliest recollection of the length my namesake and favourite cousin would go, to ensure I was safe and well. Peter is the eldest son of my mother’s brother and 14 years older than me.

He became very much a part of my life after that day, a bond borne out of his concern for me and my respect and fondness for him.
As fate would have it, he had to carry me again after I became paralysed. Every Saturday for four years, he physically lifted me from the wheelchair into his car and took me to physiotherapy sessions.

I was not exactly light, although I was emaciated during those initial years after the injury. Moreover I was a head taller than him. It was a challenge manoeuvring me into the narrow confines of the car with my limbs flailing in all directions.

The effort was made especially more difficult by his two bad knees sustained from a serious accident. His superbike crashed and went under a speeding truck on the expressway. It was a miracle he survived.

Peter was always only one phone call away. Anywhere I wanted to go, anything I wanted to do that my parents could not manage, he would be there, rain or shine. Never once did he ever say no to me, or consider doing all those things a burden.

He took me on road trips and adventures I thought I could never get to experience. He instilled confidence in me at a time when I had none, at a time when giving up was the easiest thing to do.

We are as close as cousins can be. When we had to move out from our respective residences, he suggested that we live close to each other. We bought adjacent apartments so that whenever my mother or I needed help from him, he was just a door away.

He has been the tree that provides shade and shelter when I need respite from the elements. He is always there. The times that I felt hopeless, his presence was enough to convince me that all would be well again because he would find ways and means to make it so.

And each time I hear the Hollies’ ‘He Ain’t Heavy, He’s My Brother’ playing, there are tears in my eyes and a lump in my throat. The song sings our story. It is a reminder of how blessed I am to be Peter’s ‘brother’.

Indeed, the road my life has meandered on has been a long one filled with many uncertainties. He has carried me along anyway, becoming my hands and my legs, neither letting me worry where it would lead to nor how it would end. With him, there is always a sense of hope.

I will never be able to return the generosity that he has unconditionally showered on me for the past 40 odd years. All I can do is pray that he be abundantly blessed with goodness and contentment every day of his life.

Peter is the elder brother I never had.

He is the brother everyone should have.

Comments can reach the writer via columnists@theborneopost.com.

Read more: http://www.theborneopost.com/2014/08/16/the-brother-i-never-had/#ixzz3Frf5nKGq

Everyone is the same inside – Breaking Barriers – The Borneo Post – 9 August, 2014

Everyone is the same inside
by Peter Tan. Posted on August 9, 2014, Saturday

Breaking-Barriers-Aug-9
Photo shows Magdaline, Jee and Abril.

WHEN Jee Abril Lien was born, she was diagnosed with spastic quadriplegia, a subset of cerebral palsy that affects both arms and legs. Abril is also legally blind and profoundly hearing impaired.

Cerebral palsy is a neurological condition that can occur during pregnancy, at birth or in early childhood. It is caused by damage to parts of the brain that control muscle movements.

The complications from cerebral palsy can lead to other issues such as speech, hearing and intellectual impairments.

Early intervention through therapies, medical treatments, assistive devices and support for the families is crucial. It improves developmental rate, maximises abilities and enables the child to be more independent for a better quality of life.

“My husband and I were heartbroken when the doctor told us about our daughter’s condition,” Magdaline Puyang shared. “We did not know what to do. It was so difficult for us.”

Magdaline and her husband Jee Fox Yao are from Miri. She left her job to care for Abril full-time while her husband works offshore in the oil and gas industry.

Following the doctor’s advice, they have been sending Abril for physiotherapy, occupational therapy and to a community-based rehabilitation (CBR) centre. These have produced positive developments.

“Abril’s limbs used to be very stiff but the spasticity has reduced after undergoing the therapies,” said Magdaline.

Being the main caregiver to Abril, Magdaline feels that it is important to have specialised respite care for disabled children which at the same time provides a temporary break for caregivers, if anything, to run errands and buy groceries.

“For example, not everyone knows how to look after Abril when it comes to feeding her with milk or food. She is three now and I have difficulty taking her out because she has grown.

“Sometimes when I am driving and she cries because of a spastic attack, I have to stop the car to help her relax.

“Parents always complain to me that when they need to go out, there is nobody to look after their children, especially single parents.
“We also need an administrative office cum activity centre for children with cerebral palsy that can also provide moral support and guidance to parents in managing their children.”

She and her husband are saving up for Abril’s future but they do not want to think too far ahead. The subject of their child’s welfare after they are no longer around is a matter that is difficult for them to deliberate on at the moment.

“No matter what, we will always love her,” Magdalene added.

While researching for more information on Abril’s condition on the Internet, Magdalene came across the Malaysian Advocates for Cerebral Palsy (MyCP), a parents and family support group with children who are similarly afflicted.

MyCP began on Facebook (www.fb.com/mycpmalaysia) in 2012. The online group now has over 1,000 members comprising medical specialists, therapists, researchers and government officers.

It was officially registered with the Registrar of Societies in December 2012 and currently has 250 registered members. The association aims to provide support for persons with cerebral palsy and their families as well as promoting the exchange of information and advocating for their rights.

The association has been actively organising public awareness programmes and seminars to educate the public on cerebral palsy, and fundraising events to finance its activities.

“Sometimes, I become stressed when Abril is sick. The mothers from MyCP support me emotionally. I have learnt a lot about cerebral palsy since joining the group,” said Magdaline.

“The parents in Miri got together and formed the Sarawak branch of MyCP in 2013. We currently have 13 members. I was appointed as the representative for the Sarawak zone.

“My responsibilities include monitoring the needs of the association as well as supporting the activities in the zone.”

Magdaline has been encouraging parents of children with cerebral palsy and those with other impairments to register with the Department of Welfare and also with the CBR centres so that they can get the needed therapies and support.

“So far, I have helped three families register their child with the CBR centres. They were not aware there are such centres for disabled people.

“Some parents do not want people to know they have a disabled child. They do not want to send their child to CBR centres. My advice to these parents is that these children may be different on the outside but on the inside they are no different from anyone else. Please open your eyes and do what is best for them.”

As part of MyCP’s Outreach Programme and in conjunction with MyCP’s Sarawak zone Hari Raya Aidilfitri celebration, the association will present 16 customised wheelchairs to its members’ children in Miri on Aug 24 at the Petronas Sports Village.

Miri Mayor Lawrence Lai has been invited to grace the occasion and will be giving away the wheelchairs.

These refurbished wheelchairs from Japan were contributed by Alumni Look East Policy Society (ALEPS). Parents have difficulties acquiring such wheelchairs as they are expensive and difficult to source.

In view of that, MyCP decided to deliver the wheelchairs to its members in Sarawak for the use and benefit of children with cerebral palsy.
Members of the public interested in attending the event can contact MyCP at mycp1malaysia@gmail.com or visit the Facebook page for more details.

Comments can reach the writer via columnists@theborneopost.com

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My important lesson of survival for this digital age – Breaking Barriers – The Borneo Post – 2 August, 2014

My important lesson of survival for this digital age
by Peter Tan. Posted on August 2, 2014, Saturday

THEY say a picture is worth a thousand words. That could be the reason my father bought a camera. He very seldom expressed himself openly. The photographs he took of family and friends during get-togethers, picnics and even when we were going about our mundane daily routines was perhaps his way of telling us how much we meant to him.

I remember sneaking his Yashica out of the house without his permission for a three-day Boy Scouts camp when I was 14. I only had the slightest idea on the ways to operate it. After shooting my first 36 photographs, I promptly exposed the entire roll when I absent-mindedly opened the camera cover without first rewinding the film back into the cartridge.

When I owned up to him what I did and related the incident of the damaged film, instead of reprimanding me, he took me through the functions of the various buttons and dials. He even encouraged me to use the camera whenever I wanted. The unequivocal support spurred my interest in taking up photography as a hobby, which I enjoy very much till now.

Fast forward to the present day. My wife and I are hobbyist photographers. We shoot for the joy of being able to freeze a memorable moment in time. Between the two of us, we have taken over 50,000 images with our digital cameras. That does not include the few thousand images scanned from negatives from my analogue cameras. All these are stored in one single external hard drive.

Additionally, in my line of work on disability rights advocacy, photographic documentation is indispensable when it comes to pushing for an accessible built environment. Pictures and videos make it easier to show best practices and issues arising from non-compliance to the code of practice. I have built an archive of such images from different countries.

On the second day of Hari Raya, while looking for images to be used in a presentation I was invited to make, I was horrified to discover the external hard drive could not be accessed. Plugging it into another computer yielded the same negative result.

Losing data from a hard drive malfunction is not new to me but it has never happened in such a massive proportion. That was a three-quarter filled 2TB drive. Other than images, the drive also held files that I needed to use on a regular basis. Calling it a catastrophe was an understatement.

On hindsight, the lack of systematic data management on my part was a disaster waiting to happen. There was no proper storage and backup of crucial files. I had not taken steps to protect my data after previous incidents.

Ideally, important data should exist in three copies and kept in separate locations; the original in the computer hard drive, one in a separate external drive and one in a different location like online cloud storage.

The extra redundancy is to safeguard the data and make sure it is still available in other locations in the event of hardware failure, fire, flood or burglary. This ideal method may not be wholly practical especially for putting the data offsite if the files are large and connection to the Internet is slow. Nevertheless, it is always a good idea to have at least one backup for those just-in-case moments.

The external hard drive still has one more year of warranty to it. Being able to claim for a replacement was the least of my problems. I preferred to have my data intact instead of a new drive any time of the day. The loss of data severely impaired my daily work. Naturally, I panicked.

Before admitting defeat, there were three steps I could do to check if it was indeed a total loss. The first step was to replace the cable. Since that was the only device in the house with a USB 3.0 socket, I had to rush out to buy another cable late that evening. Fortunately, the shop was open in spite of the holiday. My heart sank when the computer still could not detect the drive with the new cable.

The next step was more complicated. It required some elbow grease in dismantling the external casing and plugging the drive directly to a computer. I found a YouTube video on it. It looked rather complicated and difficult, and not something I would want to attempt. Opening up the casing would also void whatever warranty was remaining.

I mulled on proceeding to the third step. Depending on the nature of the malfunction, whether it was software or physical damage to the hardware, it could cost anything between RM300 and RM5,000 to have the data recovered in a specialised clean room facility.

The charge at the extreme end was exorbitant. It would cost more than my entire computer set up with extra cash to spare. I asked myself if my data inside the drive was worth that amount. In reality, the images my wife and I captured are priceless. They collectively make up a 10-year pictorial diary of our journey through life.

I reckoned I could do no worse by exhausting all manners of troubleshooting the first step again by myself if I was going to fork out that amount of money for data recovery at some point in time later. After the fifth attempt at plugging and unplugging the drive, lo and behold, the speakers emitted two familiar beeps that indicated the hard drive was detected and recognised by the computer.

Having learnt a heart-stopping lesson on the importance of backing up data properly and regularly, I got a two-drive network attached storage (NAS) and have been transferring all my files over to it. The same data is written to both hard drives simultaneously. In case one fails, data can be recovered from the other drive.

The unit costs slightly over RM1,000 for two 2TB hard drives. This is a small price to pay for some peace of mind. There is data I cannot lose or do without. These are photographs that hold special meaning to me like my father’s photographs were to him. I was lucky all my data in the external hard drive was intact this time. This scare has taught me the importance to making backups and the dangers of putting all my eggs in one basket.

Everyone who has computer data saved in one location should seriously consider this issue. The two questions they should ask themselves are “How much is the data in my computer worth?” and “Can I afford to lose all the files in the event of a malfunction or disaster?”

Comments can reach the writer via columnists@theborneopost.com.

Read more: http://www.theborneopost.com/2014/08/02/my-important-lesson-of-survival-for-this-digital-age/#ixzz3FrcHYMki