Myths and Misconceptions About Disabled People – Breaking Barriers – The Borneo Post – 8 March, 2015

Myths and misconceptions about disabled people
by Peter Tan. Posted on March 8, 2015, Sunday

I WORK from home. The main door is always closed in the daytime to give a semblance that no one is home. An open door is usually an invitation to itinerant salesmen and donation collectors of dubious organisations to come knocking.

But that did not deter the postman who was delivering a letter that required a signature from tooting impatiently at the front gate. It took me a while to open the door. When he saw me in my wheelchair, he said matter-of-factly,

“Oh, you are sick. There is a letter for you. Can you sign?”

There is a general perception that people who use wheelchairs are unwell like what the postman thought of me. That cannot be further from the truth.

The wheelchair is an implement for people with mobility impairments to move around conveniently. Those who use one either have spinal cord injury, poliomyelitis, spina bifida or other conditions that limit or restrict movement.
True, when we have these conditions we are more predisposed to certain diseases but on the whole, most of us are reasonably healthy.

We visit the doctors more regularly. Those check-ups are to ensure that we continue to stay healthy just like people who make it a point to go for a full medical check-up annually to monitor their well-being. Certain communities take a divine stand when it comes to our conditions. We are either seen as a gift from God or believed to be suffering the curse for misdeeds of a previous life.

Whether we are a gift or a curse, we make up an estimated one billion or about 15 per cent of the world’s population. The Almighty must have been very generous or very angry with humankind to make so many of us this way.
Personally, I see it as humans trying to play God by thinking along such lines. The real curse here is not that we have impairments but a world that creates barriers that make it difficult for us to participate meaningfully in society. Some people can get very personal with their questions. More than once, I have been asked if I can “get it up?”

By that, they were asking if people like me can have an erection for sexual intercourse and father children.
Yes, we can although it varies between different men. We may or may not need treatment to improve the chances of success in the conception process.Likewise, disabled women are able to conceive and again it varies between different women.

Having answered that, the next question would invariably be “Will the baby have an impairment if either one or both
of the spouses have impairments?”

That should not happen unless either one or both have hereditary conditions that can be passed down and cause impairments. And most impairments are not hereditary in nature. Answering questions like these can get tiresome after the umpteenth time. Before the advent of the Information Age, I had to rely on the few books I had about my condition and the bits of medical advice I get from doctors to learn about all these.

Thankfully, there is the Internet now which is loaded with a wealth of information on this topic that can be easily accessed. Still, there are other misconceptions that have to be answered personally. Other than the impression that wheelchair users are sick, we are also perceived as always on the lookout for a cure to walk again.

It is not wrong to say that some of us still harbour hope for that to happen. There are also those of us who have more pressing concerns like earning enough to live by day-to-day. Walking aside, we will be very grateful for an environment where we do not have to contend with barriers all the time and a society where we do not have to face discrimination.

Moreover, medical science has also not advanced to the stage where there is a surefire cure to make people who are paralysed walk again. Most are still at experimental stages and the treatments literally cost an arm and a leg.

The other misconception is that disabled people cannot live independently. Independence in this context means not having the functional abilities to do everything by oneself but having the ability to make decisions autonomously.
Very often, we are perceived as not being able to take care of ourselves. Major and minor decisions are made on our behalf by family members and society on issues that affect us directly.

In reality, a proper support system like the personal assistant service has proven that people with the severest impairments can also live independently as being practised in a number of developed countries. That is the reason the global disability rights movement has adopted the slogan of “Nothing about us without us” to promote our right to self-determination and that we are properly consulted at all levels of decision-making.

Finally, do disabled people need charity or welfare?

The answer is mostly no if equality in all aspects of life can be guaranteed. These include equal access to the built environment, public transport, education and employment.

However, the United Nations Enable Fact Sheet on Persons with Disabilities estimates unemployment among my peers is as high as 80 per cent in some countries with employers often assuming we are unable to work.
On the contrary, Malaysia has successfully implemented supported employment with ample evidence to show disabled employees are more dedicated in their work and stay longer in their respective positions compared to non-disabled employees.

Imagine the amount of productivity a country can achieve if half of that number can become gainfully employed. The salary earned will flow back into the economy. The disbursement of welfare aid can be reduced. If this is not a win-win situation, then I do not know what else is.

Before I end, there is a need for me to clarify that disabled people do not consist of wheelchair users or people with mobility impairments only as it may appear in this column. Disabled people also include those with other impairments like visual, speech and hearing, intellectual and learning impairments.

There is a hoard of misconceptions regarding those impairments I would like to cover in this column in the future. Many of the negative perceptions with regards to disabled people are without basis stemming from ignorance, culture and superstitions that should be dispelled.

In all honesty, I believe a better understanding of disabled people by society can forge a relationship that can break barriers and bring us one step closer to seeing that we are all the same.

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Nadhir’s Crystal Clear Vision – Breaking Barriers – The Borneo Post – 1 March, 2015

Nadhir’s crystal clear vision
by Peter Tan. Posted on March 1, 2015, Sunday

Nadhir (standing) conducts a Disability Equality Training session with participants.
Nadhir (standing) conducts a Disability Equality Training session with participants.

WHO would have known taking the wrong medicine could lead to dire consequences? That was exactly what happened to Muhamad Nadhir Abdul Nasir. I had the opportunity to listen to him share this tragic episode and also his life story one evening recently.

“I had a fever when I was nine years old,” he recounted. “My father brought me to a clinic for treatment. I took the medicine when we got home.”

His condition became worse. On top of that, his skin began to peel off. In a state of panic, his parents brought him to a government hospital.

He did not get any better after being warded for two weeks. That was when his father decided to transfer him to a private hospital where he fell into a coma. When he regained consciousness three weeks later, he had lost vision in both eyes. The medicine the doctor in the clinic prescribed to him had triggered the Stevens-Johnson Syndrome, a rare and life-threatening disorder of the skin and mucous membranes.

“It damaged all my internal organs and my eyes. I was told in that same year another person had died from the same condition. Although I had become blind, I felt I was given a second chance.” He is the third of six siblings. He stopped going to school and stayed home, spending most of his time playing with his brothers and sisters after he was declared legally blind in April 2000.

“I remember I was very bored. Two months later, my mother enrolled me into the Sekolah Kebangsaan Pendidikan Khas (SKPK) Princess Elizabeth in Johor.” It is the first residential school for the blind in Malaysia. Nadhir’s primary schooling was uneventful as he learned Braille and new skills to help him cope in school and his daily activities.
However, he faced problems when he entered secondary school at Maktab Sultan Abu Bakar in Johor Bahru. The college has an integrated programme where blind students studied together in the same classrooms with other sighted students.

“I could adapt to the new environment but sometimes the teachers did not have the skills to teach disabled students. One time in the mathematics class, the teacher told me I could not use my Braille typewriter because it was too loud and was disturbing the other students.

“Because of that, I could not take notes or do my exercises. When I asked the sighted classmate who was sitting beside me what was being written on the whiteboard, the teacher asked me to please not talk during her class.”
Therefore, it was no surprise he failed all the mathematics tests for that entire year.

“When I was in Form 2, the teacher was understanding and I did very well. The next year, I got the same teacher who taught me in Form 1 and I again failed all my mathematics tests. Thankfully, I passed with a ‘D’ in mathematics for PMR.” Nadhir, is 24 now and has just graduated with a bachelor’s degree in anthropology and sociology from the University of Malaya.

“My mother always tells me, ‘I never treat you as disabled. You are as normal as other children.’

“She kept pushing me until I achieved what I’ve achieved today. My mother trained me and shaped me to be a better person and also to be role model to my other siblings.” Nadhir is considering furthering his studies. “I am really interested in doing disability studies. As no university in Malaysia is currently offering this I will have to go to the United Kingdom, Australia or Japan.

“If there is an opportunity for me, I will go. Applying is one thing. The other thing is the financing to support my studies. But I have the other option of doing a Master’s degree in public policy specialising in disability policy in a local university.”

As far as his future is concerned, he is clear on the direction he wants to proceed.

“Frankly speaking, I want to be an expert in disability studies and almost everything regarding disability issues as a researcher, academician and a pioneer in establishing a disability studies institute or course in Malaysia.”

At the same time, he is of the view that access to education and employment for disabled people should not be limited to the few common disciplines, for example, the blind are usually encouraged to take social science or Islamic studies.

“I am a very optimistic person. Even when a person is blind, he can also become an architect or mechanical engineer given the right support and facilities.”

Having gone through disability personally and understood how his friends with visual impairments have to struggle with the same problems, he is determined to tackle the prejudiced perceptions towards disabled people in any way he can. What drives him is not the need to only help himself but to improve the well-being of others as well. He aims to make society a better place so other people and the next generation do not have to face the same problems he contends with now.

He attended a Disability Equality Trainer’s course earlier this year and plans to use the knowledge and skills he gained to formulate more effective ways to achieve that end. Following his certification as a trainer, he set up a company called Inclusionist Steps to offer training, consultancy and research on disability-related matters.
For parents with disabled children, he advises them to not doubt their children’s capabilities and potential.

“Please do not restrict their access to education because believe me, we can do it. Disabled children too can succeed in education.

“As for all disabled people and my disabled friends out there, even though there are barriers in society, the most important thing is to empower ourselves, not just in gaining knowledge or vocational abilities but also in terms of decision-making and our philosophy of life.”

Wise words those. To say I was impressed with Nadhir is an understatement. Indeed, he has come a long way from that day 15 years ago when he woke up from the coma and discovered he had lost his sight. It is a rarity for me to meet someone as young as him who can talk about disability issues with such passion and profundity.

The one hour we spent chatting where he opened up his life to me is much appreciated. I hope more young disabled people will take up the advocacy mantle like what he is doing. The future can only be better if we are willing to work hard to improve the present.

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The City That Tin Built – Breaking Barriers – The Borneo Post – 22 February, 2015

The city that tin built
by Peter Tan. Posted on February 22, 2015, Sunday

Art impression by Ernest Zacharevic of a man collecting recyclable items.
Art impression by Ernest Zacharevic of a man collecting recyclable items.

SINCE we got married, my wife Wuan and I have always celebrated Chinese New Year at her hometown in Ipoh. We would drive up from Kuala Lumpur to spend a few days with her family. This year it was with her mother and elder sister after her father passed away last year. We went on Tuesday, two days earlier, to avoid the traffic jam that is common during major festive seasons.

The two-hour journey on the North-South Expressway was invariably monotonous with wide expanses of oil palm and rubber tree plantations dominating the landscape most of the way. Halfway through, I became drowsy, most probably caused by long stretches of unexciting terrain.

We decided to get off the expressway and take the Federal Route 1 – or more fondly known as the Old Trunk Road – for a change. It was the main artery that connected most of the major towns along the western part of the peninsula until the tolled expressway was constructed in the 1980s.

Driving became a little more dangerous though. Narrow roads without median separation of opposing traffic increased the risks of head-on collisions. Because of the danger, I drove more carefully which was just fine as we were not rushing for time anyway.

The detour through the rural heartland added another hour to our trip but was well worth it. We got to enjoy interesting sights not normally found in the big city. In between towns, fruit smallholdings, quaint Malay kampong houses on stilts, small townships, roadside stalls selling local produce and people going about their activities gave us a warm sense of civilisation unlike the rather detached feeling we had from driving through the expressway.

We also learnt the names of places we have never ever heard of. The unhurried pace in these smaller towns fascinated us, considering that we are near retirement age and are looking to settle down in a place with a more leisurely lifestyle.

We arrived in Ipoh expecting it to be a hive of activity but the city was unusually quiet. Perhaps the murmurings about the poor state of the economy nationwide were true after all. The food court we had our dinner was less than half full. The car parks at the hotel we were staying were mostly empty when it was difficult to get choice parking spots in the past.

Ipoh was the city that tin mining built. From a mere settlement surrounded by thick jungles and limestone hills in the Kinta Valley, it catapulted into unprecedented economic growth when what was probably the world’s richest alluvial tin deposit was discovered in the valley in 1876.

During the tin mining boom in the early 20th century, many immigrants from China struck it rich working the mines and providing support services to the industry. It is no wonder Ipoh was known as the ‘City of Millionaires’ in its heyday.

The city lost some of its lustre when the tin market collapsed in the late-1970s. The downturn not affected only tin miners but the general economy of the entire Kinta Valley. Many lost their jobs and had to venture elsewhere to find work.

But the resilience of the city saw it weathering through the crisis and grew to become a major tourist destination and food paradise. The limestone hills are home to several popular cave temples that are popular with tourists and locals alike. We passed by some of these temples which are close by to the Old Trunk Road.

The many times that we were in Ipoh, we never thought of soaking in the charms the city has to offer. We made it a point to do it differently this year and woke up early the following morning with the intention of hitting the trail of seven wall murals done by Lithuanian artist Ernest Zacharevic in various parts of Ipoh’s Old Town.

Being the eve of the Chinese New Year, many business and food establishments were closed. The few coffee shops that were still opened in that area did a roaring business with long queues of patrons waiting for tables. It also meant that the streets were deserted, which made is easier for us to gallivant all over in our hunt for those artistic pieces.

We spent a good two hours crisscrossing the Old Town hunting down the murals one by one. The ones we found impressive were the old man sipping coffee and tin mining. The mural of the old man stirred up controversy in December last year.

A Malay daily reported several people claiming it resembled the portrait of the late Communist Party of Malaya secretary-general Chin Peng. The allegation was refuted by the Ipoh City Council, which also denied rumours the mural would be repainted.

The tin mining mural christened Evolution was aptly situated in Jalan Bijeh Timah. Done in Chinese brush painting style, it depicted the industry that put Ipoh on the world map, which sadly has become a part of history now.

Nevertheless, I am glad that we spent time exploring the Old Town. With Wuan as the tour guide, I got a better insight into the city where she grew up in. Other than the murals, I got educated on the various landmarks that were built during the British colonial era like the beautiful railway station, town hall and court house. All three buildings were situated just a stone’s throw away from each other.

“We should explore more of the city next year,” I told Wuan.

She nodded in agreement.

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