Category: Articles

A little help can go a long way
September 12, 2015, Saturday Peter Tan, mail@petertan.com

LIVING with physical impairments is a life full of hardships. For every one thing I can do, there are 1,001 others that I can’t. My barely functional thumbs and fingers make it difficult to perform whatever requires fine motor controls. Small objects like buttons and coins are particularly troublesome. Basically, I lack the dexterity even for the simplest of tasks.

Getting dressed used to be a 30-minute struggle to put on the diaper and pants, pull up the zip and button up the shirt. By the time I was done, I would be too exhausted to do anything else, let alone wear socks and shoes. The reverse would take an equal amount of time if not more because unbuttoning a shirt is even more difficult. Now my wife helps me and all it takes is just three minutes each time.

I may have accepted that I would never walk again a long time ago but the limitations to what I can do with my hands can still be very frustrating. I try not to think too much of it but at times I wish my spine was fractured a vertebra or two lower. That would have left me with full use of my hands. I would then be able to hold the spoon better or play the guitar, among others.

In the face of these inadequacies, I have two choices before me. I could either feel exasperated each time I struggled with a task or take it easy and accept the reality. I chose the second option as I discovered getting upset would not solve anything at all. Perhaps I have mellowed with age or maybe growing older has made me wiser. Whatever it is, it has reduced a lot of grief on my part.

I was building a Lego spaceship a few days ago when the tiniest bit of a part slipped from my fingers and fell onto the floor. With one hand holding on to the wheel of my wheelchair to prevent myself from tipping over, I bent down in an attempt to retrieve it.

As hard as I tried, I couldn’t grip it tight enough to pick it up. It took a good 20 minutes of patience and an aching arm before I finally managed to retrieve it by rolling it into an envelope. It was an unusual method. Most importantly, it worked. That was what mattered most.

It was not like this in the beginning. I had difficulty controlling my frustration whenever something like this happened in those early years. My mother bore the brunt of it as she was the sole caregiver then but she took it all in her stride. I am not proud of those outbursts.

Thinking back, I realise how I must have hurt her despite all she had done for me. If I could, I would do anything to make up for those times when I had so thoughtlessly chewed at her. There are times we don’t get a chance to make things right and this is one of them.

Being remorseful without a way to make amends is a painful feeling to bear. I have since learnt to keep my emotions in check no matter what. Loose lips not only can sink ships but also strain relationships. In the end, everyone gets hurt.

So what if I have to go through multiple challenges every day? Those around me also have to face challenges in trying their best to make it easier for me. If there is anything they deserve, it is respect and gratitude for standing by me through thick and thin, and certainly not my outrage.

As the years go by, I find that I need more help as I get weaker and weaker. Where I once could cook, do the laundry and mop the floor all in a single day, I now lack the stamina to even prepare the ingredients for a simple meal. Other than wearing clothes, I also have to depend on my wife for many of my daily chores.

Although her help is most welcomed, the sense of gradually having to depend on someone else more and more can be deflating and scary. I dread to think of the day when I have to fully depend on her for my every need. We would both be in our golden years by then.

This is why I am determined to see the Independent Living project take off. The personal assistant service will provide much-needed support for disabled people like me who need help one way or another. Consequently, I will become more productive as I don’t need to exert myself too much and become exhausted any more. I still may not be able to do 1,001 things but if I can achieve at least half of that, I will be more than happy already.

Read more: http://www.theborneopost.com/2015/09/12/a-little-help-can-go-a-long-way/#ixzz3uN1wFzgR

A dream coming true
September 5, 2015, Saturday Peter Tan, mail@petertan.com

I AM excited and there is a good reason for it.

The vision I have been harbouring for the past 10 years is finally coming to fruition. Readers of this column may recall my journey into disability rights advocacy began when I attended the first Independent Living (IL) Workshop in 2005.

The objective was to equip participants with the skills to eventually set up Independent Living Centres (ILCs) in the country. On my part, there have been several attempts to set up an organisation to run an ILC. That, somehow, failed to materialise for one reason or another. I eventually moved on to become a facilitator on disability equality. Nevertheless, the implementation of IL in Malaysia has always been close to my heart.

ILCs provide services for disabled people, regardless of their impairments to live in the community with the support of personal assistants.It allows us the liberty to make decisions by ourselves and direct personal assistants to help us in tasks we wish to perform. Personal assistants will only act on our instructions. They are not supposed to act on their own accord on our behalf.

Such kind of support system may seem unusual but being able to make decisions autonomously is one thing many severely disabled people who have to depend on family members as carers seldom get to exercise. IL provides

that avenue of self-determination which most non-disabled people take for granted.

These are the four key concepts that clearly spell out what IL is all about:

1. Disabled people should live in the community instead of in institutions.

2. Disabled people are not patients to be cared for, children to be protected or Gods to be worshipped.

3. Disabled people can identify the necessary assistance required and manage it.

4. Disabled people are victims of prejudice rather than victims of their own impairments.

As disabled people, we have the right to live a dignified life of our own choosing just like everyone else. ILCs strive to support that aspiration by offering peer counselling, independent living skills trainings and consultations. These are designed to prepare us in regaining our self-confidence, managing our own personal affairs more efficiently and forging meaningful relationships with the people around us.

In May this year, Prime Minister Datuk Seri Najib Tun Razak announced the government will work with the private sector to support the establishment of 7 ILCs to serve 11,000 disabled people in the 11th Malaysian Plan.

I was initially sceptical if these centres would be run true to the spirit of IL or that they may turn out to be massive institutions to house disabled people because there were no detail on how it would be implemented.

Little did I know I would be directly involved. I am one of the two local resource persons roped in to play an advisory role and have been privy to witness from inception of what, in all probability, is the greatest initiative the country has ever undertaken to enhance the welfare of disabled people, especially those with severe impairments, hence my excitement, and also trepidation.

The more involved I got, the more anxious I became. Although this project involves various government agencies, foreign technical experts and the private sector, coordinating the trainings and setting up of 7 ILCs simultaneously to serve 11,000 people is a gargantuan task by any measure.

My concerns aside, when fully operational, these ILCs will bring immeasurable benefit to disabled people like me who are dependent on the support of others for our activities of daily living.

Take my case, for example. I can only go out on weekends when my wife is not working. I need her to help me dress up, assist me into the car and store my wheelchair in the boot. With the support of personal assistants, I will be able to go out on weekdays too which will increase the frequency I can conduct trainings and run errands.

This will improve my life in many ways as I will be able to do many more things without having to depend on my wife all the time. In turn, she will have more time to herself instead of having to spend all her off days tending to my needs without respite.

The Department for the Development of Persons with Disabilities (JPOKU) is the lead in this project and will be working closely working with the Japan International Cooperation Agency (JICA) and the Human Care Association of Japan to put into operation a plan to train selected candidates in setting up and managing the ILCs.

JICA collaborated with the Department of Social Welfare to organise three workshops on IL and peer counselling from 2005 to 2007. Human Care Association was the main partner that dispatched resource persons to conduct the workshops in Malaysia and hosted trainees when they were sent for further trainings in Tokyo.

This project will probably take up most of my time from now on as it is slated to run from 2016 to 2020. I want to concentrate my time and effort in providing as much support as I possibly can in ensuring that it will lead to the birth to even more ILCs after that. Ideally, each district should have at least one ILC.

I can foresee there is a lot of work to be done for everyone of us involved. But I am not going to fret too much because this is what I was initially trained for and this is what I am going to do since the opportunity to put my skills to good use has come knocking so providentially.

Read more: http://www.theborneopost.com/2015/09/05/a-dream-coming-true/#ixzz3uN1EonPs

The accidental technician
August 30, 2015, Sunday Peter Tan, mail@petertan.com

MY wife Wuan is an accountant by profession. She works in a financial institution where she fiddles with numbers and figures all day long.

“Don’t you feel rich dealing with so much money all the time?” I used to tease her.

“Those are not my money,” she would respond in a matter-of-factly tone.

Needless to say, she avoids doing anything involving numbers when she is not in the office. On those days, she likes to potter around the small patch of a garden she has cultivated with magnolia figo, ylang ylang and a variety of other flowering plants.

In one corner, four adeniums stand in shallow pots with their bulbous roots showing. These were from my mother’s garden. I brought them as presents for her when we met for the first time. They were only tiny sprouts then. How they have grown over the years.

Up to the day we met, she had never known anyone who used a wheelchair. But people could not have known that had they seen how she handled my wheelchair with ease, folding and unfolding it, helping me up kerbs and through narrow spaces as if she had been doing it all her life. That was all only in the first few days after we met.

I was using wheelchairs with steel frames at that time. While they were affordable, they were not exactly durable. Some parts would inevitably break after three years or so. Repairing them was expensive. It made better sense to replace them instead, which was what I usually did.

Steel wheelchairs come in standard sizes. They are heavy, ill-fitting and require some effort to push. The years of using them have exacerbated my backache. My shoulders were giving me problems too from the strain of repetitive pushing.

That was when I decided to invest in a made-to-measure fully-customised titanium frame wheelchair. Although it was insanely expensive, I figured it would reduce the back and shoulder issues that were bugging me. It is light and very manoeuvrable. My backache has since gone away and I feel less strain on my shoulders each time I push now. A good wheelchair does make a difference!

Such an expensive wheelchair also has moving parts that need to be serviced or replaced occasionally. One evening not long after I started using it, I had difficulty making it go straight. Something squeaked each time I moved. We found a bunch of hairs tightly wound round the caster, jamming it in the process.

As I bought it directly from the United States, the shops dealing in rehabilitation equipment here were not too keen on repairing it with the excuse that they were not familiar with it or that they did not have the proper tools.

The wheelchair is my only means of mobility. Without it, I would be stranded and lose all my independence, especially when I am home alone during the day while Wuan is out working. A desperate situation like that called for desperate measures. We went to a local hardware shop to get suitable tools to try to fix the problem. Fortunately, the wheelchair came with a manual with instructions on assembling and disassembling the various components.

Even then, it was a daunting task. Wuan was not mechanically inclined. The only time she ever held a tool in her hand was either to tighten a screw or hammer in a nail. There was little need for her to go beyond that in the course of her work or daily routine. And now, she had to repair a wheelchair. She was not sure if she could manage but we had no choice.

Unscrewing the nut from the bolt needed a little more strength than she could exert. After struggling for 20 minutes, she finally managed to disassemble the caster from the fork. She put it back together again after making sure all the hair and grime had been removed. Just to be sure, she did the same with the other caster as well. One hour later, both casters were spinning like a top. I felt guilty when I noticed her chipped fingernails and soiled hands. She saw the look on my face and knew what I was thinking.

“It’s all right,” she said, “I can trim the nails and wash my hands.” She has since learnt to perform other crucial adjustments to make the wheelchair work better for me. Amazingly, she has also become adept at replacing the inner tubes, rim tapes and tyres. A few days ago, she had difficulty inflating one of the wheels. The problem was traced to a faulty valve. She took three minutes to switch it with a new one and all was good again.

We keep a small bag of tools and spare parts handy for quick repairs and adjustments. With her around, I no longer have the fear of being stranded somewhere should something go wrong with my wheelchair. I am blessed to be loved by a woman who would go to great lengths to learn new skills just for my well-being and peace of mind. She is heaven-sent.

Read more: http://www.theborneopost.com/2015/08/30/the-accidental-technician/#ixzz3uMzi1zJo