National Day reflections
by Peter Tan. Posted on August 31, 2013, Saturday
TODAY we celebrate National Day. As with previous years, I have taken the opportunity to look back and ponder over the meaning of this day. How far have we progressed from that momentous day when the British lowered the Union Jack to mark the end of colonial rule for Malaya?
I was born nine years after the Federation of Malaya gained her independence. Indeed, the country has moved on to greater heights. We formed Malaysia together with Sarawak, Sabah and Singapore in 1963, although Singapore left two years after that to become a country on its own.
As a kid, this day meant it was a school holiday and I got to watch the parade live on television. The appearance of the Agong with cabinet ministers on the stage, the sea of people parading in their colourful costumes, the elaborate floats and the show of military hardware always fascinated me. I had also participated in march-pasts at state-level celebrations when I was in the secondary school.
The country has grown by leaps and bounds, especially in the 1970s due to the rapid industrialisation of the economy. We now make our own cars and host some of the most modern high-tech electronic manufacturing facilities. We boast of a world class airport and a comprehensive expressway network.
Petronas Twin Towers, the tallest twin towers in the world, stand proudly in Kuala Lumpur. They are visible from many kilometres away, even in places where accessible facilities are non-existent, making it difficult for disabled persons to move around freely.
A Malaysian has gone to the International Space Station that orbits the Earth at an altitude of 350km and stayed there for 11 days. On Earth, disabled persons have to grapple with a public transport system that is full of barriers and have poor connectivity.
A friend who is also a wheelchair user noted, “We can send a man to space but we cannot make the environment convenient for people like us.”
I could not agree with him more.
I recently took some time off to visit the suburb where I grew up. It was as if time had stood still there. Much of the infrastructure that has been in existence for decades has not been upgraded for better accessibility. Such is the irony of our country as we race headlong to become a developed nation by 2020.
In spite of the technological advances the country has achieved, disabled persons still cannot realise full participation in society. Basic amenities are still sorely lacking. The technical skills applied in building the twin towers, airport and the many other mega projects have not been put to good use in making the built environment friendlier.
‘Merdeka’ means independence but it is a freedom that disabled persons can only yearn for. After all this time, we are still being ‘colonised’. Our lives are restricted in so many ways by physical obstacles, prejudiced mindsets and discrimination.
We have to resort to street protests to get our plights looked into. We have to make repeated complaints to have our issues resolved. Many times the complaints are ignored and disregarded.
This form of problem-solving has been going on for as long as I have been a disabled person. If this is the way to get things done, disabled persons will still be holding street protests when the country celebrates her 100th National Day.
Legislation such as the Uniform Building By-Law 34A and the Persons with Disabilities Act have done little to make society better for disabled persons. Without proper enforcement and implementation, these laws are not worth the paper they are printed on. The very fact that I am ranting here is proof that both laws have not been effective.
I dare say that the government is neither serious nor doing enough to resolve disability issues. The head does not know what the tail is doing. The problems are solved on a piecemeal basis and not in a holistic manner.
For example, accessible public transport is an issue that involves several ministries and local governments. The parties have not been working together as a team. In the end, accessible buses cannot be used because the bus stops are not properly constructed.
The government needs to be proactive in looking at the big picture of the various disability issues. Disabled persons should not need to hold attention-grabbing events to get the government to listen to us. It is the government’s job to ensure the well-being of all citizens without the need for such radical promptings.
My wish for today is for Malaysia to become an inclusive and accessible society by 2020. The developed nation status will only be more meaningful if the rights of disabled citizens are respected and upheld. A lot can be achieved in six years if we start now. We can do it. Let’s do it. Happy National Day!
Comments can reach the writer via firstname.lastname@example.org.
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Four steps to empowerment and change
by Peter Tan. Posted on August 24, 2013, Saturday
IGNORANCE is not bliss where disability rights are concerned. The lack of awareness often leads to abuse, oppression and discrimination. Disabled persons who are oblivious of these rights accept that the unfair treatments they receive are the direct result of their impairments. They blame themselves for the lack of opportunities in education, employment and other activities.
Years of being told that they are useless and are a burden becomes embedded in their minds. They believe in self-perpetuated statements like, “I cannot go to school because there are no facilities for people like me who cannot walk.”
There is also a perception that being disabled is a fate worse than death. This is perpetrated through the mass media in campaigns against drunk driving. Survivors of such accidents are often portrayed as severely disabled and can no longer lead a meaningful life.
It does not help that disabled persons are generally viewed as objects of charity and pity, always needing handouts and donations to survive. This view is reflected in the mindset of disabled persons, who accept the poor quality of life as fate and that nothing can be done about it. They become trapped by the internalisation of these negative images of themselves.
This is a vicious cycle but one that can be broken. There are four steps for disabled persons to become empowered and break free from these negative clutches. They can become agents of change, not only for themselves but for the good of other disabled persons and society as a whole.
The first step is the desire for change. This is also the most crucial step. The fact that the desire comes from within makes it a powerful catalyst to ignite the path to empowerment. It usually begins with them wanting to take charge of their lives. This can be as simple as eating a healthier diet or managing personal finances.
Doubts and fears are rife. The uncertainty of how to go about moving forward can seem daunting at times. Nevertheless, the fire has been lit. There is no turning back now despite the lack of direction.
The desire for change does not stop after the first step. It is a continuous process that builds on the successes of each subsequent step. As they learn more about themselves and what they can accomplish, they set the bar higher and higher.
The second step is the realisation that change is possible. Optimism takes over the feelings of helplessness and hopelessness. This is a stage of self-discovery. They begin to learn of their potential and interests.
The vast resources on disability issues available in the Internet are a boon for the awakened spirit. It is here that they often find inspiration and role models to emulate. They begin to realise the possibilities of living a fulfilling life in the face of adversities and challenges from reading the success stories of people in similar conditions.
The third step is shifting the paradigm of disability. This is the most difficult step to get past. It is hard to convert a mindset that that has long accepted impairments as the root cause of the problems faced by disabled persons. Many leaders in the disability movement still cling on to this belief.
In reality, the problems are social construct. The infrastructure is not built to accommodate everyone. As a result, people are disabled by poor designs and bad attitudes rather than by their impairments.
Once disabled persons can see with clarity where the problems lie, the previous statement becomes “I cannot go to school because there are no accessible facilities.”
Being able to transfer the ownership of the problems from themselves and their impairments to society liberates them from the negative internalisation.
The realisation that impairments are not the cause of disability allows emotional healing from years of self-oppression and self-blame. They become confident of themselves. They regain their dignity. They are no longer ashamed of their impairments.
At this instance of enlightenment, they become truly empowered and ready to take on the challenges and obstacles that come their way.
The fourth step is taking proactive actions. Being empowered and aware of their rights, they work on a broad range of disability issues to make society accessible, inclusive and fair to all. They become role models to empower other disabled persons. They become agents of change.
Empowered disabled persons do not necessarily work full time or solely as activists and advocates. Many are successful professionals working in a variety of fields. When the situation demands their expertise, they contribute their time and effort to the cause.
This process of empowerment does not happen overnight. Some take years while others take decades to move from Step One to Step Four. The process may seem formidable but it usually progresses naturally and unknowingly. They do not even notice that they have moved up another step.
As long as disabled persons are motivated to take the first step to change their lives for the better, everything else will fall into place eventually. This is the power of empowerment at work, one step at a time.
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Of quacks and snake oil pedlars
by Peter Tan. Posted on August 17, 2013, Saturday
“WHAT is wrong with you?” a stranger asked as I passed by him outside a shop. He had been observing me from a distance.
“There is nothing wrong with me,” I responded, feigning ignorance. I already knew where the question would lead to.
Unperturbed by my answer, he followed me from behind and fired a barrage of questions, “Why are you using a wheelchair? You cannot walk? What happened?”
Before I could answer, he continued, “I know a sifu who can treat you. He has treated many people like you. They could walk again after six months of treatment.”
“Thank you. I am not interested,” I declined politely and pushed my wheelchair a little faster to shake him off my back.
“You do not want to walk again?” he shouted after me.
It was not that I do not want to walk again. I was simply tired of the same rigmarole strangers, well-meaning relatives and friends put me through all the time. They all knew of someone who could make me walk again and insisted that I try the treatments whether I liked it or not.
Do not get me wrong. I am grateful for the people around me who care for my well-being. However, their persistence in recommending treatments can be off-putting. They saw my impairment as a condition that had to be corrected and took it upon themselves to dish out unsolicited advice.
There is also a reason why I am wary of these word of mouth recommendations. In the early years after my accident, my parents, in their haste to get me back on my feet, spent a small fortune on alternative treatments after I was discharged from the hospital.
They engaged Chinese sinsehs (traditional Chinese physicians) recommended by relatives and friends to massage my paralysed limbs with the hope that I could regain full use of them again.
The first sinseh who treated me was recommended by a relative who sang praises of his skills in “healing hopeless cases” like mine.
He would heat up a pungent liniment on a small tin can stove that he brought along and applied it copiously on my body and massaged me from head to toe. I was not allowed to bathe for four hours after that although the smell of the liniment was nauseating.
He had assured my parents that it would take no more than three months for me to be up and running. When it was apparent that his massages did nothing to cure me, he collected the final instalment of his overpriced fees and was never heard from again.
I went through a few more of such sinsehs, each charging exorbitant sums but delivering nothing. I was still as paralysed as ever and my parents were none the wiser. They were always on the lookout for more treatments as soon as the previous ones failed to show any result.
Friends who were into multi-level marketing were never short of newfangled products to recommend as well. The various health supplements, gadgets and magnetic mattresses could purportedly help with my recovery. My parents were invariably taken in by their persuasive wiles. None of them worked.
Even then, my parents never gave up hope. They took me to temples situated in remote places at ungodly hours to consult mediums of the supernatural. Some of the mediums said that I was punished for offending a deity. Others said that it was my karma.
The mediums performed elaborate rituals to appease the deity I had supposedly offended and made me drink water mixed with ashes from burnt paper talismans. These did not work either.
I am still troubled by the fact that my parents had used up a large chunk of their hard-earned savings to chase after sham treatments for me. There was no shortage of tricksters who were more than eager to prey on their desperation.
Although I had indicated to them that I was not too keen on the treatments, parents being parents, they wanted to give me the best they could afford. I cannot fault them for their lapses in judgement in this matter. They did it because of their unwavering love for me.
The harsh reality is that there is no sure cure for spinal cord injury at this point in time. That is the reality I have come to accept after many years of hoping against hope. Once the spinal cord is injured, there is little medical science can do to reverse the damage and restore the loss of function and sensation.
The most promising treatment for now is stem cell therapy. However, it is still at clinical trial stages and very expensive. There is also no guarantee that it will work for everyone undergoing the treatment.
Likewise, robotic exoskeletons are being extensively developed to assist people with spinal cord injury. Again this technology is still not widely available and is expensive to boot.
All said, physiotherapy was the only treatment that worked for me. It helped improve strength in the remaining muscles that were functional. It kept my limbs supple. I worked with a dedicated physiotherapist for five years in an attempt to walk again. That effort failed but I have no regrets because I am proud that I tried my best.
Whenever I meet people with recently acquired spinal cord injury, my first advice is to not waste money on alternative treatments that have not been proven to work. This advice usually falls on deaf ears.
They would still put themselves through the same useless treatments only to discover later that it was indeed an exercise in futility. It is sad to see them repeating the same mistakes my parents made despite being warned.
The tens of thousands of ringgit frittered away could have been spent on better wheelchairs, assistive devices and support services. I hope people in situations similar to mine will take heed of this advice.
Comments can reach the writer via firstname.lastname@example.org.