All I want for Christmas – Breaking Barriers – The Borneo Post – 19 December, 2015

All I want for Christmas
December 19, 2015, Saturday Peter Tan,

AFP photo
AFP photo

IN my mind, Christmas had always been a time of feasting and carols, and of course the Christmas tree gaily adorned with shiny baubles, colourful ribbons and sparkly fairy lights. Needless to say, this was my favourite time of the year, other than Chinese New Year, for the abundance of delicious food and merriment.

My father was a Buddhist but he never stopped me from joining in the festivities celebrated on my mother’s side of the family, most of whom are cradle Catholics. The faith has been practised in her family since the time of my great-grandfather. He arrived at the island of Penang in the mid-19th century as a coolie and was later proselytised by Catholic priests.

The spread for the Christmas party was the same every year, which was home-cooked food comprising curry chicken, fried noodles, prawn fritters and ‘loh bak’. Simple they might be but I enjoyed them nonetheless. Those were fun times especially when the church carollers came to the house. I’d sing along and join in the merriment. Christmas days then were mostly spent celebrating with family and friends at home.

Exchanging presents was not a tradition in the family. For the life of me, I can’t remember ever making a wish or receiving a gift during such occasions. Still, that didn’t make me feel deprived. I was contented to just soak in the cheerful atmosphere and be amongst relatives I seldom got to meet at other times.

Yes, I was that easily entertained as a kid.

Nowadays, long before Advent – the four Sundays leading up to Christmas – the malls are already decked in holiday trappings. All the major malls I have been to recently are filled with whimsical decors and Christmas trees of all shapes and sizes to evoke that festive ambience.

Carols are being incessantly played over the PA system. Signs are everywhere to remind shoppers again and again that this is the time for giving and gift-buying. It is hard not to be drawn into a jolly disposition by such concerted campaigns.

I don’t mind all that though – it brings back memories of those wonderful Christmases of my childhood years.

All that has infected me with the festive bug. To say that I am excited is an understatement. I have inadvertently caught myself humming ‘It’s Beginning to Look a Lot Like Christmas’ while going about my daily chores. Since I am in the mood and I have never really made a wish for Christmas, I spent some time thinking about what I wanted.

In many ways, I am lucky to be blessed with all I need for a comfortable life. Despite that, I truly wish for a respite from the lethargy that has been plaguing me and gotten progressively worse over time. Tasks I could previously perform with ease are becoming strenuous. I need long breaks in between to recover.

I find that I am becoming more and more dependent on my wife for many of my daily activities now. This is a great inconvenience as I am home alone on weekdays while she goes to work. Many times, I have to wait for her to get back to help me.

This deterioration is not unexpected. My physical impairments have made me work my body harder than I should. The strain has aged it beyond its years. It doesn’t help that I have advanced kidney disease and mild anaemia caused by thalassemia. The convergence of these factors makes it a triple jeopardy for me.

This is also the reason why I took up the challenge to help establish ‘Independent Living Centres’ in the country. I foresee that I would need the support services provided by such centres. As I grow older, my wife too will grow older. She may not be able to help me with the heavier tasks that she is handling now.

Don’t be mistaken. I am not sad over this. I have accepted that at some point in time, I will have to depend on the assistance of others for many of the tasks I am capable of now. This is a matter of time. It is just that the decline has manifested much earlier than I had anticipated and I am not fully prepared for it yet.

It will be nice to feel energetic and raring to go for once, particularly during this festive season. It has been so long since I felt fit that I can’t remember what it is like anymore. Friends used to tell me I look cool and composed all the time. The reality is that those were the times I felt drained and sitting still was all I could do short of lying down to rest my weary body.

This is all I want for Christmas. It will be a lovely present indeed. For a day or two, I don’t have to depend too much on my wife.

At the same time, she can just laze around without me interrupting her every now and then. What a merry Christmas it will be for the both of us.

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When working is not an option – Breaking Barriers – The Borneo Post – 13 December, 2015

When working is not an option
December 13, 2015, Sunday

THE welfare system for disabled persons in Malaysia needs to be reviewed and revamped.

This should be done for two reasons. First, it is to counter the rising costs of living since the implementation of GST, the reduction of subsidies and depreciation of the ringgit. Even the members of Parliament voted to increase their own salaries by RM4,500 in April this year.

The second reason is for a more equitable distribution of aid and one that reflects the expenses necessary for basic living. However, the way the financial assistance is structured is perplexing. Those who are “productive” can secure more assistance than those who are not.

Disabled persons drawing a monthly income of RM1,200 and below can apply for the allowance for disabled workers (EPC) of RM350 monthly.

According to the Department of Social Welfare, the allowance is an incentive to encourage them to continue working, become selfsufficient and productive, and to cover their basic living necessities.

Those who are unable to work are only eligible to apply for monthly financial assistance of RM200. This is the irony of the situation.

While I understand the logic behind the incentive to encourage gainful employment, I cannot fathom the reason for the lower amount of monetary assistance for those who are unable to work and have no income.

Is it not sensible to provide them with more financial assistance?

There are a number of reasons why disabled persons are unable to work. It could be due to the severity of their impairments, the lack of academic qualifications, prejudiced employers, and barriers in the environment and transport. From time to time, I would get messages from other disabled persons asking if I know of any job opening.

They had been searching but unsuccessfully. It certainly was not for want of trying they are not working.

Not all disabled persons are covered by insurance, SOCSO or have families that can support them financially. For those who have no other sources of income, how long can the RM200 monthly allowance last? One week? Two weeks?

No doubt there is a slew of other benefits for disabled persons like provision of assistive devices and free medical treatments at government hospitals. Nevertheless, at the end of the day, even with all those benefits, we still need to eat. The policy-makers and officers holding the purse strings should honestly ask themselves if they can survive with this sum of money on food for one month.

In most cases, food is not our largest expenditure. The disposable medical items we have to use are. Medical treatments may be free but we have to pay out-of-pocket for many of the disposable items we use on a daily basis like diapers, catheters and urine bags.

Some medicines are not provided by the hospitals and they can be quite expensive. All these will set us back RM400 monthly, at the very least.

We may be able to skip meals occasionally but scrimping on these items that maintain our health is not an option. Using catheters and urine bags longer than recommended could result in urinary tract infection, which, at its worst, could irreversibly damage the kidneys. That is not all. Because buses are not accessible, we have to take a taxi every time we need to go out to get these items or for important appointments. And taxi fares are not cheap.

We are not talking about creatures of comfort here. These are rudimentary for survival. Many find it hard to make ends meet.

The imposition of GST on the essential items adds a greater burden to our already strained finances. Policy-makers should walk a mile or two in our shoes to understand the hardships we are enduring when they make decisions that affect our livelihood.

Disabled persons are not statistics. We are real. Our problems are real. Our needs are real. In all the conferences and seminars on disability I have attended since 2005, there has been little discussion on how the social system can support the financial aspects of non-working disabled persons.

When it comes to money for welfare, there is always the excuse of not enough allocations from the government to go around but astonishingly there is always money for mega-projects.

There are those who are in real need of support and they should get it. These are human lives and dignity we are talking about. Giving RM200 is mere tokenism any way I see it. The monthly financial assistance for non-working disabled persons should be revised upwards to a more realistic sum.

It should cover two square meals a day and all the essential medical items required to maintain their health.

Society values accomplishment and applauds productivity. I have no argument with that. At the same time, we should not overlook those who do not measure up to these standards due to their impairments or other unavoidable circumstances.

We can only grow as a society if we help each other and provide support for those who need it to ensure they too are able to enjoy a reasonable quality of life.

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When ignorance is endangerment – Breaking Barriers – The Borneo Post – 6 December, 2015

When ignorance is endangerment
December 6, 2015, Sunday Peter Tan,

MY wife and I had wanted to get some shelves for organising our books, my training materials and various knick-knacks that were occupying the three-seater sofa and everywhere else we could pile them on. We were afraid if we didn’t allocate a proper place for them, guests visiting us would think we are hoarders.

Incidentally, IKEA recently opened its second store in Malaysia near where we live. Not wanting to jostle with the massive crowd on the opening day, we went the following weekend. We frequent its other store which I would rate as the most accessible building in the country. Much thought had been put into making the entire building friendly to disabled people.

The first impression I got from the second store was positive. Accessible parking spaces in the basement were plenty. I counted 12 from where we parked our car – there could be more. They were located near the entrance to the elevators and I could push myself effortlessly because the floor was level all the way.

My one gripe was that the markings on the floor to indicate these allocated parking spaces were not clear. Anyone could have parked their car in those spaces without realising it. I could see that they were still doing some final touch up on parts of the building. Hopefully, they would get around to making the markings more noticeable.

At the ground floor, the only way for me to get to the showroom was by way of elevators but both were not working. We approached a young woman who was manning the information counter for assistance.

“The lifts are not working,” she stated the obvious: “You can use the escalator.”

I was taken aback by her obliviousness to the fact that I was in a wheelchair. Most shopping malls prohibit wheelchairs and prams from using escalators for safety reasons. There was no way I was going up on the escalator – even with assistance.

“Is there another way to go up?” I asked her while pointing to my wheelchair, adding: “I can’t stand or walk.”

She pondered over the situation and then went away to consult a colleague.

“The lifts are not working,” the colleague repeated when she came over and indicated I could use the escalator.

I had to explain the predicament again to her. Being familiar with the layout of the first store, I was certain there was another elevator somewhere that I could use. She agreed there was but said I was not allowed to use it for one reason or another.

While we were going back and forth on the matter, two mascots trooped out from a door nearby. And lo and behold, behind that door was the elevator I was talking about. To make a long story short, they eventually let me use it to get to the showroom.

Such inconveniences may seem trivial but imagine having to explain the problem again and again. It was so frustrating and tedious. Shopping should be an enjoyable experience. It should not turn into a minor argument that would leave me feeling exasperated.

The episode I went through was needless if the staff were trained to handle customers’ problems with tact. Generally-speaking, companies should consider inculcating their staff with soft skills and think on their feet when facing such situations.

While I understand there are company rules and policies to follow, some degree of flexibility should be permitted in unexpected circumstances. Having said that, I wouldn’t fault the IKEA staff for the trouble and their ignorance. As the store just opened for business, they were probably new and still learning the ropes.

I have experienced having to reason with workers in cinemas, shopping malls and restaurants when they refused to accommodate me, which they rightfully should. I try not to be a difficult customer as far as possible but when the omission of their services or facilities leads to discrimination, I would not hesitate to point it out and demand that they be corrected.

Thankfully, this is not something I have to do often.

Front-line staff shouldn’t only be sensitised on the proper etiquette when dealing with disabled customers. As we are living in a pluralistic society, they should also be equipped with skills to serve customers of diverse ethnicity, age, religion and culture.

We got the shelves we were looking for. Assembling them should be straightforward. We already have a number of similar shelves set up in the living room, store room and kitchen. The difficult part now is to move the existing furniture around.

With a bit of luck, we may be able to create enough space to accommodate all the stuff.

This will certainly make the living room neater, airier and my training materials easier to find.

As it is, I always have to dig through stacks of documents whenever I needed to use them. I really can’t wait to have guests in the house again.

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