Being agents of change – Breaking Barriers – The Borneo Post – 12 April, 2014

Being agents of change
by Peter Tan. Posted on April 12, 2014, Saturday

WHEN faced with situations where our rights are trampled on and disregarded, what should we do? Do we swallow our pride and accept the indignity? Or do we stand up and fight back to reclaim what we rightfully deserve?

Let’s face it. The society we live in is far from perfect – not everyone is treated equally. People are being oppressed and discriminated against all the time. Some cases are unintentional and occur because of ignorance. The sadder fact is that the others are deliberate and calculated. No reason can justify these acts, whether done on purpose or not. These transgressions should be pointed out and the wrongs righted.

One of the groups that has been the victim of unfairness is the disabled. Even when international and domestic legal instruments have clearly defined and recognised our place in society, the government cannot be solely depended on to protect those rights. Government employees are typically apathetic and complacent when it comes to resolving issues faced by disabled people.

This is where disability rights activists and advocates come in to safeguard those rights and expedite the process of inclusion. There is a difference between activism and advocacy, although the line between the two is often blurred. Generally, activism applies radical measures such as protest in public places to jolt the public into a sense of awareness on a particular issue. Advocates work more in the background to lobby the government and private sector in effecting legislative and policy changes.

Even in the USA, UK and Japan, which all have long and established disability rights movements, activism and advocacy is still an ongoing process. Governments and private establishments everywhere are the same.

They have to be constantly reminded to be inclusive in their practices. Otherwise, they will either forget or conveniently ignore issues that cause disability and allow discriminatory policies to be put in place.

What does it take to be an activist or an advocate? First of all, an activist must possess a certain degree of fearlessness as the use of militant methods in the forefront risks running afoul of the law.

There was a time when we discussed chaining ourselves to public buses to make a point about the inaccessibility of public transport in the country. In the end, we decided not to go ahead with it due to the legal implications.

An advocate needs to have a clear understanding of disability rights, accessibility standards and negotiating skills in influencing the relevant parties to achieve those means. A lot of research, reading and writing is required when there is a need to make presentations and forward memorandums to convincingly argue a case.

There is no hard and fast rule on how to become an effective activist or advocate. We all learn through trial and error what works and what does not. I am fortunate to have mentors who are veterans and experts in the field of disability.

They unreservedly shared with me their knowledge and encouraged me to undergo courses to understand the subjects at a deeper level.
Apart from that and most importantly, those wanting to get involved in the disability rights movement must have passion and empathy; passion to keep at it in the face of great challenges in a society that does not take the rights of disabled people seriously; and empathy to internalise the travails of people experiencing different kinds of disability in order to represent them effectively.

Activists and advocates both have their own roles in advancing disability rights. They are integral in different stages of a particular cause. For example, activists started the ball rolling by organising public protests to oppose the discriminatory practice of a certain airline that barred mobility impaired persons from flying with them a few years ago.

After having caught the attention of the top brass of the offending airline and also the government, the advocates then negotiated and worked with these parties to remove the discriminatory practice and provide training to the ground and cabin crew to better deal with disabled passengers.

The lack of people working actively and full-time in this area has compelled the few of us who are active to take on both roles. We usually wear one hat or the other depending on the demands of the situation.

Most of us who are involved with this do it at our own time and expense. We took the mantle of leadership not out of choice but necessity as stakeholders directly affected by oppression and discrimination.

Frankly speaking, the effort that we put in does not commensurate with the results we get. For every one issue we successfully advocate for, we fail in several others. That is the reality. That is why changes have been slow in coming. Still, we must push forward lest we lose even that one shot at making a difference.

It is my hope and those of other leaders in the disability rights movement that more disabled people will join us in this effort to make society more inclusive. When more of us work together, the louder our voices will become.

We ourselves must be willing to do our bit to change the situation for the better. If not, who else will do it for us? After all, the slogan we often use to demand to be included in all levels of decision-making on issues that affect us has been ‘Nothing about us without us’.

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Rediscovering the joys of looking good again – Breaking Barriers – The Borneo Post – 5 April, 2014

Rediscovering the joys of looking good again
by Peter Tan. Posted on April 5, 2014, Saturday

I LIKE to look good. Yes, there is a vain man hidden inside me somewhere.

I feel that I should be presentable doing the things that I am doing now, especially when conducting workshops and giving presentations at conferences.

A sloppily dressed speaker certainly would not come across as confident and convincing to the audience no matter what.

After all, Shakespeare did give sound advice on this matter in ‘Hamlet’ when he wrote: “For the apparel oft proclaims the man.”

Buying nice clothes that fit may be a simple task for many but it is a challenge for me. I am lanky.

My limbs are long. Most ready-to-wear clothes do not fit me one way or another, especially long-sleeved shirts.

Those that are well-fitting at the shoulders have cuffs that end short before the wrists, making it appear like they were a couple of sizes too small.

On the other hand, I am unwilling to pay premium prices for tailor-made ones. That is the why I stopped wearing long-sleeved shirts a while ago.

Having said that, the words ‘fashionable’ and ‘wheelchair user’ also do not go hand in hand for a number of other reasons.

There was a time when I was using an external catheter and a urine bag.

I had to wear baggy pants to ensure that the catheter or urine bag tube did not get kinked every time I went out.

The catheter leaked often anyway, soaking my pants and leaving me reeking of the unmistakeable odour.

Those were utterly embarrassing episodes.

I only went out when it was absolutely necessary, until I discovered adult diapers.

That coupled with intermittent catheterisation where I empty my bladder every few hours keep me dry throughout the day.

The feeling of not having to carry a urine bag with me wherever I go and the thought of not having to wear pants that make me look like a rag doll is psychologically liberating to say the least.

But the real issue for me when shopping for clothes was the lack of accessible fitting rooms in stores.

The rooms that were available were mostly tiny cubicles with insufficient space to accommodate even a single wheelchair.

For shirts, I would just quickly try them on where I found them in full view of other shoppers.

Some privacy to check if they really fitted me would have been nice.

I still do get gawked at occasionally for doing that but I have outgrown the embarrassment after all these years.

As for trousers, I would buy one and try it at home. If it fit, I would get more of the same. One thing about being seated all the time is that the pants tend to hike up the legs, gather at the crotch and create an unsightly bulge.

The right fabric and cutting can prevent that.

That is why I have stuck with one brand of pants for the past 10 years.

The fabrics, cutting and styles of this particular brand are consistent with my taste.

I have been gradually replacing all the baggy and ill-fitting trousers in my wardrobe with them.

I cannot even begin to imagine what it must be like for female wheelchair users when they need to try out blouses, dresses and skirts.

We surely cannot expect them to throw their modesty to the wind like I do when buying shirts. It is disappointing to note that most clothing stores prefer to maximise floor space for their merchandise rather than accommodate the needs of a segment of their customers who require larger fitting rooms.

Recently, while my wife and I were out shopping, she received an SMS informing her that a relative from her hometown had passed away. We decided to make the two-hour journey there to attend the wake on the same day.

As I was improperly attired for a solemn occasion, we went hunting for a white shirt at a large clothing chain store. I found one in long sleeves that I liked and at a price that was reasonable.

We took the shirt and went looking for a fitting room as I wanted to be sure that the sleeves were long enough. To our surprise and delight, they have a room that is large enough to accommodate us both and has manoeuvrable space to spare.

And the best of it all was that the shirt fitted me to a T. Needless to say, I will be visiting this store again should I need new clothes.

My wife later discovered that another international clothing chain also has not one but two similar fitting rooms in one of their stores.

It looks like these newer chain stores that are aggressively opening up in the major cities are rising up to the demand of making their stores inclusive to the diverse needs of their customers.

Such accessible facilities do not only benefit disabled people. They are also convenient for parents with prams and senior citizens with mobility issues.

I could not find specific information pertaining to the suggested dimensions for fitting rooms, or for that matter, making retail establishments accessible, in the Malaysian code of practice on access for disabled persons to public buildings.

There are however a wealth of guidelines on this subject as required by the American with Disabilities Act (ADA) available on the Internet.

The basic principles to make these establishments accessible are to ensure that all customers are accorded equal access to services and facilities as far as possible.

These include unimpeded pathways, amenities that are functional to people with differing needs, clear and appropriate signage, and staff that are properly trained to handle each and every customer with respect and dignity.

Businesses are becoming aware that disabled people have families that are potential customers too.

It therefore makes good business sense to provide accessibility in their establishments to tap into this segment and maintain them as loyal customers.

Buying clothes used to be a tedious affair.

I have almost forgotten how fun it can be to try them in front of a full length mirror.

With this recent discovery of accessible fitting rooms, I can foresee that the next time I step into one of these stores it will be enjoyable.

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Blood Test for March 2014

There were no significant changes to the blood test results from the one done in December 2013. Serum creatinine dropped to 299 umol/L. Since the condition of my kidneys seemed to have stabilised, I have requested for a half-yearly medical review instead of quarterly.

Renal function test, liver function test and lipid profile on 21 March, 2014.

Blood serum minerals and nutritional aneamia on 21 March, 2014

Complete blood count on 21 March, 2014.