Wish list on International Day of Persons with Disabilitiies

My wish list on day celebrating disabled

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 30 November 2015

 

People with disabilities (PWDs) will be celebrating International Day of Persons with Disabilities on Thursday.
 

It is a special day set aside by the United Nations since 1992 to highlight the concerns and rights of more than one billion disabled people around the globe – earning us the category of being the largest minority group in every society of the world.
 

As a person who has been disabled for more than half a century – and a wheelchair-user for nearly as long that period – here are some quick tips that I would like to share with my readers.

These are jottings from my trusty old scrapbook, which I have been keeping over the years and on my experience with being handicapped. I hope that it will prove helpful for both PWDs (especially new ones) and the able-bodied.
 

I am also targeting these points at doctors and healthcare workers – and anyone else who wants to know more about disability – and what needs to be done in order to make our world a better and more meaningful place.
 

They are listed in no particular order.
* If you are able-bodied, never refer yourself as “normal”. If that’s what you are, then what does that make us? “Abnormal?” “Alien?”
PWDs have been around since the beginning of time. Disability is a natural aspect of the human condition.
 

Use “non-disabled” instead. No need for dramatic and pretentious terminologies, such as “differently abled”, “physically challenged” or others.
 

For instance, why should we be more physically challenged or differently abled than the non-disabled?
 

They sound more alienating and confusing than being helpful.
I am comfortable with the word “disabled” for now, until we are able to coin up a better one.
 

The term, to me, means I am disabled by society’s negative attitude towards me by not providing for my needs and rights to function as a normal human being like the non-disabled.
 

In short, I have no problems with my physical condition or how I was born – only with the way people think about me and treat me.
 

* Can the able-bodied who work for the cause for the disabled please stop stealing our thunder? This seems to be happening over and over again, despite constant rhetoric from them that PWD should be authors of their own destiny.
 

Disability events organised by the government are still dominated by the able-bodied instead of PWDs.
 

If disabled people are featured, they are always the same faces – very successful persons who managed to make it to the top.
This is, unfortunately, not a true representation of the majority of disabled Malaysians in the country.
 

Can politicians (and ministers) at such events please stop hogging the microphones at the rostrums and sit back in your VIP seats and allow disabled Malaysians to speak instead?
 

No one likes to be talked down to all their lives, especially when you have no clue of what life is like when you are in a wheelchair or have to depend on a white cane to get around to support yourself and your family.
 

Our goal should be to give more opportunities to put PWDs in leadership roles so that they can be in charge of matters involving them.
 

Politicians, when you go to represent our country overseas in international disability events, please take along one or two disabled role models with you to showcase them to make our country proud.
 

And please make sure they are ordinary leaders selected from one of the many disabled organisations in our country who are trying hard to fight for other disabled people.
 

The exposure will not only help the disabled individuals grow in strength but also make an excellent public relations exercise.
 

* Dear local councils throughout the country: how long are you going to continue ignoring the rights of your disabled citizens in your area?
 

We all know that it is not the prime minister’s or minister’s job to create a disabled-friendly infrastructure in your respective local councils.
 

Please stop holding parties for the handicapped once in a while and feed them. Please set up a monthly technical committee on disability already.
 

Invite the disabled to sit with your expert engineers and town planning executives to tell you what they need, such as universal-designed pavements, disabled-friendly toilets, covered car parks for disabled drivers and more.   
 

Please be serious about your intentions. There is no time to lose – with more people becoming disabled every day through road accidents, illnesses and old age.
 

Once these facilities start popping up everywhere, your residents will praise you for your good work – both those with disabilities and those without.
 

Let’s all decide to make that qualitative change which is needed on this blessed week to empower our disabled community everywhere. – November 30, 2015.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/my-wish-list-on-day-celebrating-disabled#sthash.BBKesBf0.dpuf

Being Serious About Disability Rights

My wish list on day celebrating disabled

Anthony SB Thanasayan Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 30 November 2015

 

People with disabilities (PWDs) will be celebrating International Day of Persons with Disabilities on Thursday.
 

It is a special day set aside by the United Nations since 1992 to highlight the concerns and rights of more than one billion disabled people around the globe – earning us the category of being the largest minority group in every society of the world.
 

As a person who has been disabled for more than half a century – and a wheelchair-user for nearly as long that period – here are some quick tips that I would like to share with my readers.

These are jottings from my trusty old scrapbook, which I have been keeping over the years and on my experience with being handicapped. I hope that it will prove helpful for both PWDs (especially new ones) and the able-bodied.
 

I am also targeting these points at doctors and healthcare workers – and anyone else who wants to know more about disability – and what needs to be done in order to make our world a better and more meaningful place.
 

They are listed in no particular order.
* If you are able-bodied, never refer yourself as “normal”. If that’s what you are, then what does that make us? “Abnormal?” “Alien?”
PWDs have been around since the beginning of time. Disability is a natural aspect of the human condition.
 

Use “non-disabled” instead. No need for dramatic and pretentious terminologies, such as “differently abled”, “physically challenged” or others.
 

For instance, why should we be more physically challenged or differently abled than the non-disabled?
 

They sound more alienating and confusing than being helpful.
I am comfortable with the word “disabled” for now, until we are able to coin up a better one.
 

The term, to me, means I am disabled by society’s negative attitude towards me by not providing for my needs and rights to function as a normal human being like the non-disabled.
 

In short, I have no problems with my physical condition or how I was born – only with the way people think about me and treat me.
* Can the able-bodied who work for the cause for the disabled please stop stealing our thunder? This seems to be happening over and over again, despite constant rhetoric from them that PWD should be authors of their own destiny.
 

Disability events organised by the government are still dominated by the able-bodied instead of PWDs.
 

If disabled people are featured, they are always the same faces – very successful persons who managed to make it to the top.
 

This is, unfortunately, not a true representation of the majority of disabled Malaysians in the country.
 

Can politicians (and ministers) at such events please stop hogging the microphones at the rostrums and sit back in your VIP seats and allow disabled Malaysians to speak instead?
 

No one likes to be talked down to all their lives, especially when you have no clue of what life is like when you are in a wheelchair or have to depend on a white cane to get around to support yourself and your family.
 

Our goal should be to give more opportunities to put PWDs in leadership roles so that they can be in charge of matters involving them.
 

Politicians, when you go to represent our country overseas in international disability events, please take along one or two disabled role models with you to showcase them to make our country proud.
 

And please make sure they are ordinary leaders selected from one of the many disabled organisations in our country who are trying hard to fight for other disabled people.
 

The exposure will not only help the disabled individuals grow in strength but also make an excellent public relations exercise.
 

* Dear local councils throughout the country: how long are you going to continue ignoring the rights of your disabled citizens in your area?
 

We all know that it is not the prime minister’s or minister’s job to create a disabled-friendly infrastructure in your respective local councils.
 

Please stop holding parties for the handicapped once in a while and feed them. Please set up a monthly technical committee on disability already.
 

Invite the disabled to sit with your expert engineers and town planning executives to tell you what they need, such as universal-designed pavements, disabled-friendly toilets, covered car parks for disabled drivers and more.   
 

Please be serious about your intentions. There is no time to lose – with more people becoming disabled every day through road accidents, illnesses and old age.
 

Once these facilities start popping up everywhere, your residents will praise you for your good work – both those with disabilities and those without.
 

Let’s all decide to make that qualitative change which is needed on this blessed week to empower our disabled community everywhere. – November 30, 2015.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/my-wish-list-on-day-celebrating-disabled#sthash.bgJMdxIf.dpuf

A dangerous world for the disabled

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 23 November 2015

 

Like most Malaysians, I was shocked to wake up to the news more than a week ago about the terrorist attack in Paris, France.
 

One of the parts, which most caught my attention was an eye-witness account of how they deliberately hunted down disabled people during the Friday night massacre in the Bataclan concert hall.
 

The report by the Telegraph spoke of how gunmen went to the disabled seating section and shot at handicapped concert-goers.

It is not difficult to imagine how extremely vulnerable the victims would have felt with their walking sticks, white canes or in their wheelchairs with virtually nowhere to escape the rain of bullets in a large, dark and deadly room. 

 

Discussing this incident with some of my able-bodied friends, I was surprised to discover that some of them were stunned by this.
Somehow they thought that when it came to crime, criminals would at least show some sympathy to disabled people, they told me.
 

Not true at all.
 

Years ago during my brief homestay experience in the United States, I met a 30-something-year-old gentleman in a wheelchair.
He and I lived in a shelter for the homeless in California.
He was the admiration of many.
 

He had strong arms and would travel to work in his wheelchair independently using public transport.
 

But what shocked me was when he told me that he was a victim of not one, but two near-death muggings.
 

He was beaten to a pulp twice in alleys with his wheelchair destroyed the first time, and taken away from him the second time.
All this for only a few dollars in his wallet.
 

His attackers only saw his disability as an easy target to commit their crime.
 

Miraculously he survived to tell his story. Passers-by came to his rescue after his assailants were long gone.
 

The good news is that none of the incidents stopped him ever from going out again. He continued to go about with his routine.
 

Closer home, my friend from Kepong in Kuala Lumpur got a taste of a similar nasty experience some months ago when she and her husband, both wheelchair users, were asleep in their bedroom.
 

Three masked young men armed with machetes broke into their house through their back door in a night of terror and ransacked their home.
 

They took away their wheelchairs, gagged their mouths with a cloth and tied them to their beds until they had relieved them of their possessions.
 

The disabled couple's maid was asleep upstairs all the while and only realised what had happened when she woke up in the morning.
Sadly in my friend's case, the crooks were never caught to this day.
There are many disabled people who continue to remain victims of crime almost on a daily basis.
 

From those who suffer physical and sexual abuse in their homes to handicapped people out in the streets who go about earning their living.
 

I know of situations where disabled members in a family who are afraid of reporting a family member for sexual abuse because they are dependent on their very help for survival.
 

There are also those who suffer physical abuse or constant harassment and taunting from an older person in the family which the police, unfortunately, don't take seriously because it involves "family members".
 

The blind have often complained about Good Samaritans who turn out to be wolves in sheep's clothing.
 

These are strangers who help them across the street, then take off with their purses and wallets.
 

Some even leave them midway on the road during the crossing and snatch away their white canes to further disorientate them while the thieves make their getaway.
 

Blind women have also spoken about being molested in buses or in lonely areas in the streets.
 

Thieves have also entered massage parlours run by the blind and robbed them.
 

Each time it is difficult to identify the assailants because the victims are blind themselves.
 

The deaf also are unable to scream out when a crime is happening to them. It is not easy for them to make a police report afterwards if no one in the police station is familiar with sign language.
 

And it's not easy if you are in a wheelchair either, especially when you are driving and have a wheelchair logo on your car.
 

I encountered a group of young men in Kuala Lumpur once who were pretty annoyed with my driving.
 

I was keeping to the speed limit of 50km in the city, more so as I have problems with balance due to my paralysed legs.
 

The four impatient men in their car kept forcing me to drive faster with rude hand signs which I ignored.
 

At one point, they overtook my car and suddenly stopped their car in front of mine forcing me to hit the brakes in my hand powered vehicle.
 

Suddenly, it was only their car and mine on the road with no one else.
 

They opened all their doors and put out their legs as if to say they were coming out of their car to get me.
 

It was at that moment when my guardian angel, my Rottweiler service dog, who had been sleeping motionlessly in the back seat all the while, decided to stand up to see what the commotion was all about.
 

With all of them suddenly looking as if they had seen a ghost, they pulled back their legs into the car, slammed the doors and sped off as fast as they could.
 

You see friends, whether there are terrorists or not, it is still a very dangerous world out there for many of us! – November 23, 2015.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/a-dangerous-world-for-the-disabled#sthash.kh8YrRlc.dpuf

What a bleak Deepavali

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 16 November 2015

While last Tuesday’s Festival of Lights was marked with lots of happiness and prosperity for many, it took on a more solemn meaning for some of my friends and me.
 

I had to turn down many Deepavali open house invitations.
 

This was because of a special water-drinking (hydration) exercise I had been following according to doctor’s order since I had a bad attack of urine infection about a month ago.

I mentioned this in my column last week. It requires me to drink about two litres of water daily and then promptly empty the bladder every three hours in order to prevent another infection from recurring.
 

House visits are not good in such situations, especially if you can’t fit a wheelchair in the toilet.
 

The good thing that came out from the experience though is that I’ve succeeded in changing my drinking habit and lifestyle.
 

I now have learnt to pay more attention to my bladder – something which we wheelchair users are often guilty of not doing until it becomes a serious problem.
 

One of my good friends suffered some bad news when his therapy dog of 10 years of age died of cancer on the eve of Deepavali.
My friend is in his 80s and has diabetes.
 

His canine companion had been keeping him company – and motivated – since his wife’s death.
 

The two grew extremely close, making the perfect bond between man and dog.           
 

His dog managed to have an incredible positive impact on his health.
 

My friend was in tip-top shape because of his daily long walks with his dog. He never missed his hospital appointments or his follow-up treatment.
 

My friend was always careful about his diet in keeping his blood sugar count at healthy levels. He did this because he didn’t want to end up in hospital and be separated from his dog.
 

This is one of the goals in animal-assisted therapy.
 

His dog shared every part of his life.
 

My friend would take his dog on long drives, share every part of his home with his furry companion and even sleep with his pet in his air-conditioned bedroom.
 

Despite his loss, however, the good news is my friend is thinking of getting another dog.
 

He is thinking of a rescued canine this time round.
 

He, however, said he would do it only when he was ready for all the responsibilities involved with that decision.
 

Some of the hardest hit during Deepavali were Hindu wheelchair users who were looking forward to the festive season.
 

Quite a few of them – particularly from Ulu Selangor – did not get their monthly allowance of RM350 from the Welfare Department (JKM).
 

And they still haven’t paid.
 

Some told me that they kept going to the bank every day until the eve of Deepavali and were disappointed to find their money, which usually comes in by the first week, not there.
 

While the lucky ones managed to borrow some money from their friends, others had to cut down on their celebrations.
 

This meant their children could not get new clothes and gifts, or watching the latest Indian movie in the cinema. There were also no special meals or treats.
 

Trips to their hometowns were also cancelled simply because they could not afford to travel. The goods and services tax has especially taken an unkind cut on them since its introduction.
 

Not disbursing their monthly allowances in time, especially during festivities, should be solved at once.
 

JKM must understand how important the money – no matter how tiny the sum – is for disabled recipients during such occasions.
 

There is simply no excuse for such a thing from happening.
A truly caring society would have taken the initiative to avoid such an incident.
 

My disabled friends in the poorer areas also told me they were left out of receiving “goodie bags” handed out by state assemblymen in their areas.
 

Some even claimed that the vouchers ended up with “friends of resident head representatives” or “persons valued for their votes” instead of those truly needy.
 

Other disabled people said they never received the allocations despite approaching the sources directly for help.
 

Centres for the disabled also reported a decrease in visits and financial support from organisations and the public this year. – November 16, 2015.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/what-a-bleak-deepavali#sthash.SfyOeOC8.dpuf

Little things help a lot

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 9 November 2015

 

When you are in a wheelchair, sometimes you can find yourself in situations where your "enemy" is inside of you rather than around you.
 

For the past several weeks, I've been battling with one of the bane of wheelchair-users: urinary tract infection or UTI.
 

This happens when bacteria enter your bladder or kidneys and cause you to have symptoms like fever, chills, and feeling "lousy" or tired.

The first to know about my condition (next to my doctor) was the editor of this column. I was afraid that because of it, it may result in interruptions in submitting my weekly articles. Fortunately, it didn't happen.
 

However, what terrified me at one point was when a private laboratory test on my urine indicated that the oral antibiotics which I was taking to arrest the problem wasn't doing the job.
 

It was suggested that I get myself admitted into a hospital for at least one week and switch over to more powerful doses of antibiotics, given intravenously.
 

This meant that I would have to take the antibiotics in an injection form at least three times a day.
 

While able-bodied people could easily skip the admission part by turning up at the hospital for their injections during the daily intervals, doing it in my wheelchair and having to turn up at the hospital three times a day was a virtual impossibility.

Not only would I need physical assistance each time from my friends to do that but the frequent transferring from my car and into my wheelchair would definitely make a mess of the needle that would have to be planted in my arms during my treatment.
 

Fortunately for me, that nightmare also didn't come true.
Instead, I found a great government specialist who decided to repeat my urine test in her hospital. The results amazingly proved negative.
 

The oral antibiotics which the earlier test had said was ineffective had, in fact, done the job to fight the infection.
 

The specialist also went the extra mile to listen to all my questions and explain in great detail what I needed to do to keep the infection away.
 

I had to drink at least two litres of water each day. I also had to make it a point to empty my bladder once every three hours.
Holding our bladders for more than that would only invite infection to set in.
 

This is one of the chief reasons public buildings from government ones to churches, sports centres and others should provide disabled-friendly toilets for the disabled and the elderly.
 

Our local authorities should see to it that this is done or threaten to remove the licences from their services to operate.
 

People with disabilities should not to be told to where adult diapers instead or given excuses when such buildings fail to provide such facilities.
 

Sometimes even the Welfare Department don't really bother to check if the hotels and other buildings where they organise events for the disabled are fully wheelchair friendly.
 

It not only shows their ignorance of disabled persons' needs but also demonstrates how much they are willing to go when it comes to providing disabled-friendly facilities.

During my recovery, I also came across a private general practitioner who kindly entertained my health queries without any complaints when I rang her up.

And she didn't charge me a sen for all her medical advice.
Having exceptional friends is also a great help during difficult times.
 

My best friend did the running around to pass my urine samples to collecting the necessary medication for me while I was stuck at home.

There is so much that the able-bodied can do for disabled and elderly people which many don't realise.
 

These include collecting their medication in the hospital or accompanying them for their doctor's appointment. They may need help to get a wheelchair in the hospital or be wheeled to the doctor's clinic.
 

Having someone to talk to can also calm the frazzled nerves of someone waiting to hear about their medical results or in some sort of pain or discomfort.
 

The difficulties I went through recently, I was most touched by the doctors and my friend who helped me.
 

Little things often make a huge difference!
 

PS: Thank you to my editor for kindly bending my deadline submissions for my articles during my illness. – November 8, 2015.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/little-things-help-a-lot#sthash.yjMS5O0D.dpuf

Parents can help fight stigma on disabled

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 2 November 2015

 

There is great love and joy to be shared among friends and participants when people with disabilities and their caregivers come together for a united cause.
 

That was exactly what happened when 400 Malaysians came together recently for “Picnic in the Park” in Taman Tasik Shah Alam several weeks ago.
 

The non-governmental organisation (NGO) called Malaysian Advocates for Cerebral Palsy (MyCP) was responsible to put the event together.

They did this with help from others to coincide with World Cerebral Palsy Day 2015 that is held on the first Wednesday of October every year. Around 70 families of children with Cerebral Palsy (CP), special guests, volunteers, supporters and media attended the extraordinary picnic.
 

The park was filled with mostly children with CP and their parents who were beaming from ear to ear, as they were given a chance to be loud and proud to be who they are in a public place.
 

This is a very unusual sight even today. There are still parents who tend to hide their children from the public eye when they have a disability.
 

This event however, was a wonderful testimony of how parents of the disabled are playing a key role to change negative perceptions about Malaysians with disabilities.
 

Additionally, the event was filled with volunteers who were young people. Many of them are students in the medical field.
 

The opportunity to mix around with the disabled (outside a hospital environment) would have done wonders in teaching them that disabled children should not only be viewed as “patients”, but as “normal human beings” – once they grow up and go to work in the real world.
 

One of the top highlights at the park were two short talks given by two adults – a gentleman and a lady – with CP.
 

Everyone were in rapt attention as the duo shared the challenges they faced from childhood until they graduated from college and university.
 

It raised the hope to everyone that anyone with a disability can succeed in life – provided they are given the right amount of support from their families and the authorities.
 

“One thing for sure, there was a big smile in each and every of the children and adults with CP that turned up to the event,” Rafidah Rafizah Ahmad, the co-founder of MyCP told me after the programme.
 

"We wish more people will get to know about CP and support our cause by accepting individuals with CP as part of society. After all, we are all humans – no more, no less", added the mother of 10-year old Izdihar Janna who also has CP.
 

The first MyCP Picnic in the Park held last year was an instant hit with the local disabled community.
 

MyCP which is three-years old, started as a simple online support group for individuals and families with CP on Facebook.
 

It gave them an opportunity to interact and communicate with each other as never before.
 

As it took root, more parents of CP children and adults began joining in realising that they were not alone – and that when it comes to children with special needs, there is always hope.
 

Picnic in the Park was the perfect way for the group to meet each other and advocate more support for people with CP.
 

It was a great reason for parents to bring out their children with CP and have a good time with others like them.
 

On each event, special games are specially organised by parents of CP children who take great pains to look into the aspects of wheelchair accessibility, safety, comfort and joy of the children to enhance their participation in the parks.
 

The recent smoke was a particular concern for children with CP as they are prone to respiratory related problems. Fortunately, special care was given to them, which in the end, reduced the effects of smoke on everybody.
 

Check out MyCP's Facebook page for more info and future events. You can also follow Janna’s journey at her Facebook page. – November 2, 2015.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/parents-can-help-fight-stigma-on-the-disabled#sthash.TTmj03B9.dpuf