The power of acceptance – Breaking Barriers – The Borneo Post – 7 June, 2015

The power of acceptance
June 7, 2015, Sunday Peter Tan,


THE most difficult part about my paralysis is not about losing the ability to walk or no longer being able to do the things I have always taken for granted. True, not being able to perform tasks by myself was a great inconvenience but there was always someone around to help me with it. My parents, kin and friends were more than willing to walk the extra mile at my behest.

Rather, what took me the longest time to recover from was the apparent loss of self-esteem and self-confidence. I was constantly mired in an emotional quagmire of feeling inadequate and unworthy. I was no longer good enough as a son, a brother, a boyfriend, and generally less of a human because of my physical conditions.

There is this thing about expecting everyone to be ‘normal’ in society. It perpetuates that invisible line that divides us into the ‘can-dos’ and ‘cannot-dos’. Everyone is compelled to conform to a certain standard. The ‘can-dos’ are the majority. Disabled people are lumped into the other group.

In the early years after my accident, not a day passed by without someone encouraging me to exercise hard, cultivate a positive attitude and work towards walking because if I continued to be one of the ‘cannot-dos’, I would be condemned into a life of uselessness.

Some things in life we cannot change no matter how hard we try. We have to live with the consequences of the bad decisions we made or calamity that befell us. In my case, the devastating effects of spinal cord injury can neither be reversed nor exercised away by sheer determination. It does not work that way. My impairments are more or less permanent.

But I did not know better then. When I could not conform to the norms, I felt defeated. For a time, wallowing in self-pity was all I did. There was a period where nothing mattered at all. It did not help that some people deemed the decline in my spirits as a sign of weakness and criticised me for the lack of resolve.

In conversations with friends with similar impairments, I learnt that we all went through similar experiences. We agreed that people may mean well but their judgemental attitudes and persistence in egging us on without understanding the underlying realities was damaging to us psychologically, especially in pushing us to build a hope we could never bring to fruition.

Perhaps many may not realise the long-term effects such acts may have on us. The truth is that as people with impairments, we are scarred by the standards of normality imposed upon us. Many years after we have accepted the fact that our conditions are permanent, we were still plagued with the lingering sense of being failures because we cannot walk.

It also does not help that our acceptance does nothing to keep ‘well-meaning’ people at bay. More than two decades later, I still have friends and strangers telling me how my life could be so much better if I could walk and that they know someone who could miraculously cure me. I told them thank you but no thank you politely. I have gone beyond that stage of looking for cures.

For me, acceptance is a long lonely journey of realisation no one can help me with, not even people with the same condition as mine. I use ‘is’ because mine has not ended yet. It did not happen overnight and does not end after that. Acceptance is not a clear-cut goal but a process.

People can do things for me but if I do not have that desire to move forward, no one can help me. My physical condition is already a given. That I can no longer change. However, my attitude and way of thinking can. That I did change.

I gradually regained my self-esteem and self-confidence because my acceptance of the permanence of my paralysis changed my outlook of life. I no longer waited for that day I could walk again. I was finally released to do other things.

Until today, I am still learning to accept and embrace the things that come my way that I have to do differently from other people. The most crucial point in this process is that I took that first step which opened my mind to the possibilities I can accomplish even though I am on a wheelchair or severely paralysed.

I realised that acceptance is not giving up. It is acknowledging the reality of the situation to enable me to move on. I am still open to avenues that can improve my life further, be they treatments, assistive devices, support services and improvement to the infrastructure.

A person’s deficit should not be seen as a stumbling block. Likewise, becoming ‘normal’ like everyone else should not be the be-all and end-all. Life can still be fulfilling in other ways regardless of whether one has impairments or not.

My advice is be realistic when dealing with disabled people. Accept us kinks and all, instead of trying to change us to fit into preconceived moulds of how everyone should be. It is good to give hope and encouragement. God knows we all need it one time or another.

Having hope is good but hope can be bad too especially when it is false. Let’s avoid that pitfall. It can go a long way towards helping us accept what we cannot change and change what we can.

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The isle where love is cast in stone – Breaking Barriers – The Borneo Post – 31 May, 2015

The isle where love is cast in stone
May 31, 2015, Sunday Peter Tan,

PENANG is indisputably a paradise for food lovers. The listing of George Town as a Unesco World Cultural Heritage Site makes it an even more attractive destination for tourists looking for tastes and sights of old world charms that stretch as far back as 1786 when Captain Francis Light first landed on Penang.

On top of that, the white sandy beaches and lush greenery make this an ideal getaway for romance to bloom and be sealed as evident by it being a popular honeymoon choice for newlyweds. However unbeknownst to many, Penang is also the setting of two tragic love stories that are as unusual as they are unbelievable.

There are two versions to the first story. It happened near what is now the town of Air Itam, nestled on the fertile foothill in the heart of the island. Legend has it that two rocks, one male and the other female, located just a short distance away from each other, used to get together to mate. How they moved was never explained but moved and mated they did according to the stories. There was also no account if they ever produced baby rocks.

Those living nearby knew about the happenings but their superstitions and beliefs taught them such supernatural occurrences were better left undisturbed lest they suffer the wrath of the spirits of the rocks. When the British arrived in the late-18th century and discovered the goings-on, they built a road between the two rocks with the sole purpose of breaking the magic. The rocks have been permanently separated since then.

Another version is that British soldiers on patrol chanced upon the rocks going through their rituals. The male rock was shot and lay mortally wounded by the side of the road, unable to get back to its original resting place. The female rock was unscathed. Since then, neither the female nor male rock have been seen moving again. To add insult to injury, houses have been built around both stones, blocking their view of each other.

Whether either version really happened or not, it will never be known for sure. But what is certain is that there are indeed two rocks near Air Itam that are known to the local community as the male and female rocks. Their legend was further immortalised when two side roads were named after them. Jalan Batu Perempuan is on the right and Jalan Batu Jantan on the left of the main road leading to the town.

The second story is also about stones but they are stone lions to be more precise. This particular pair of male and female lions have been standing guard outside the Goddess of Mercy Temple in George Town for the past two centuries. The male lion with his front paw resting on a ball stands on the left while the female with her paw on a lion cub stands on the right.

The temple, believed to be the oldest in Penang, was built in the 1800s by Chinese settlers on a plot of land donated by the East India Company. It was constructed according to the auspicious principles of feng shui. The idols on the main altar inside the temple commanded an unimpeded view all the way to the sea which was considered favourable.

During the night when all was quiet and the town was asleep, the stone lions were said to come alive. They loved to frolic at the seaside nearby, only returning to their respective posts at the temple compound just before sunrise.

The Chinese at that time believed the good feng shui, the Gods and Goddesses and the antics of the lions were contributing factors to the prosperity of the community. The British, wanting to break the stranglehold of Chinese traders and exert their own authority over commerce in the area, built a clock tower to block the Gods’ and Goddesses’ sea view. As a result, the feng shui of the temple was irreversibly ruined together with the supernatural powers that animated the lions every night. They became just another pair of lifeless statues.

Till this day, the story of this purported act of sabotage is still making its rounds, mostly passed down from one generation to the next by word of mouth. With each relay, the stories get changed a little here and embellished a little there. I heard both stories from my parents, elderly relatives and friends. The versions differ slightly from one person to another.

The issue of whether it really diminished the influence of Chinese traders is open for debate. A steady stream of worshippers still throng the temple during major Taoist festivals and Penang is the place where many immigrant Chinese made their fortune long after that. Perhaps, one can argue that had the good feng shui gone undisturbed, the Chinese could have been even more prosperous but that we will never know.

The complicity of the British in the two stories could also be a reflection of those times. Superstitions and suspicions would have abounded, brought about by the differences in cultures, beliefs and political agendas of the respective communities fighting for dominance over the economy and control of an important seaport of that era.

Truth or mere folklore, unusual narratives like this make for compelling stories that appeal to our sense of romanticism. The heartrending portrayal of love found and lost, even when they are of mystical creatures of rocks and stones, are sure to tug at the heartstrings and add to the character and charm of an already interesting island. The stories have survived two centuries. They certainly will continue to be related in one form or another for the next two centuries.

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My thoughts on the 11th Malaysia Plan – Breaking Barriers – The Borneo Post – 24 May, 2015

My thoughts on the 11th Malaysia Plan
May 24, 2015, Sunday Peter Tan

Inside the Human Care Association, the first independent living centre in Japan established in 1986.
Inside the Human Care Association, the first independent living centre in Japan established in 1986.

I WAS out running errands the whole of Thursday and did not get to watch Prime Minister Datuk Seri Najib Tun Razak table the much anticipated 11th Malaysia Plan (11MP) in Parliament. When I got home, I downloaded a copy of his speech and the massive 389-page document to read what is in store for us in this new five-year plan.

As I glanced through the pages, the point that caught my attention most was that the government, with the cooperation of the private sector, is targeting to have seven more independent living centres (ILCs) throughout the country. This is estimated to benefit 11,000 disabled people.

I’ve written about this topic several times in this column but now it’s as good as any other to revisit it seeing that it is mentioned specifically in the 11MP. My first thoughts were whether the ILCs are going to be modelled after those in the USA and Japan where the system is already established and working?

I am heartened by the government’s move to finally recognise this important aspect in the inclusion of disabled people in mainstream society 10 years after the practice was first introduced in Malaysia. If implemented correctly, disabled people, especially those with severe impairments, can look forward to a significantly better quality of life. Any disabled person who needs some form of assistance with activities of daily living will benefit from the services of an ILC.

As far as I know, only one ILC in Malaysia is recognised by the Welfare Department. The centre is managed by the Society of Independent Living for the Disabled Selangor. It was established in 2008 and is based in Petaling Jaya.

At present, severely disabled people are dependent on their family members to provide care for them. Some have to live in nursing homes when family members are unable look after them. In both cases, they have few opportunities to exercise control over their life as most of the decisions are usually made by the caregivers, be they family members or paid staff.

On the contrary, the practice of independent living is based on the philosophy of giving disabled people the right to exercise and exert choice, self-respect and self-determination, and living in the community with the support of personal assistants instead of living in institutions.

There is the need to understand that independent living is not about a disabled person being able to perform all the activities of daily living independently and without help. The word ‘independent’ here means disabled people taking responsibility for their own lives to realise full participation and equal opportunity in society.

Where there is a need, personal assistants can provide support for the tasks required like feeding, bathing and toileting. Personal assistants are not volunteers but salaried workers receiving market-rate pay. This is to ensure that the services rendered by them meet the expectations required.

My training in Tokyo and Bangkok on this subject gave me valuable insights into the inner workings of ILCs. In Japan, to qualify as an ILC, the management must be headed by a disabled person and the majority of committee members must be disabled persons.

These centres are purely administrative offices to coordinate services that are vital to the independent living of members, namely the provision of relevant information, personal assistant referrals, peer counselling and advocacy activities. ILCs do not provide vocational training but concentrate on its core activities of providing services. The only training conducted in the centres are independent living skills and peer counselling, both which are crucial in preparing members to live in the community. There are no long-term residential facilities in ILCs except for the experience room where members learn to live with the support of a personal assistant. This learning process can last from three days to one week. Members are not allowed to stay there indefinitely.

Traditionally, ILCs are established by disabled people to provide services and for carrying out advocacy activities. As they go along, these centres apply to the government for funding to support their activities, mainly in the provision of personal assistants for members. They also procure funds from private sectors for such purposes.

Here in Malaysia, the government is taking the lead in offering funds in establishing ILCs. Disabled people should make full use of this opportunity to expand the practice of independent living in the country.

However, other than what I read from the documents downloaded from the Office of the Prime Minister’s website, I have been unable to gather further information on the implementation and mechanics of this scheme.

My main concern is that the ILCs are not run true to the philosophy of independent living. There are a number of centres that do not provide the core services to support the independent living of members but still call themselves ILCs.

One of these is the group home where disabled people are gathered to live together and trained to perform tasks by themselves. I must emphasise that it is neither the role of ILCs to conduct such training nor provide such residential facilities.

As I see it, a group home is essentially another form of segregated living and institutionalisation where those residing in such facilities cannot exercise the freedom of choice to choose who they want to live with, do what they wish as and when they wish. Additionally, life and routines in such homes are regulated. But I am just speculating. Without more information from the Welfare Department, we have to wait and see. Nevertheless, I sincerely hope the conditions to establish the ILCs will adhere to the principles of independent living and stay faithful to the spirit in the provision of essential core services to support disabled people to live in the community.

Other than that, the 11MP also committed to increase the employment of disabled people in the public sector and improve the accessibility in public places, among others. This is nothing new. These areas have been mentioned in previous Malaysia Plans and are issues disabled people have been harping on for the longest time.

As far as I can see, little has been done in the form of implementation and enforcement. Talk to any disabled person and I am certain they will confirm what I have said. Our struggles remain the same from one five-year plan to another. Dare I hope the situation will change for the better with the 11MP?

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