Wrap up of 2015

The good, the bad and the ugly

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: 28 December 2015

 

It's a wrap, folks, as 2015 comes to an end on Thursday, making way for the new year on Friday.
 

In my column today, I thought I would check out some of the major issues and stories I covered over the last 12 months.
 

I decided to focus on the ones with the most lessons to learn about life and disability, spoken from experience by those who were personally struggling.

At the start of the year I had the honour of sharing a true story of an inspiring mother of a seven-year-old boy with a disability. 

Her child not only has one disability but multiple handicaps. Not only that but the boy's condition sometimes makes him to injure himself unknowingly.
 

This is because he has a sensory problem. He does not understand or realise that he is inflicting injury or pain on himself.
Because of this, pore tapes are used on his fingers in order to prevent him from hurting himself.
 

One of the hardest thing for a mother to do is to get the public to understand what her son is going through. Some strangers even confront her in public mistakenly thinking that she is abusing her son by tying him up.
 

Her worst experience was when she was confronted during lunch by a stranger. He kept staring at her son and shockingly asked, "Is it something you ate, or did wrong during pregnancy that made your son an 'aborigine' and 'shouting and acting like a monkey'?"
 

Mum's reply to the rude man was, "My son never asked to be born this way. He is multi-disabled, and a non-verbal and non-walking person who is merely trying his best to communicate in the only way he knows how to.”
 

"He is a very beautiful boy – and it's so sad that you can't see it. If you would allow yourself to see him with an unbiased view, you would realise that too!"
 

Needless to say it was a powerful lesson about what real blindness and human ugliness was all about.
 

However, it isn't only the disabled who are treated disrespectfully.
Migrant workers are treated cruelly too. Some of them can be extreme and outrageous.
 

I was shocked to hear another true life incident of how a domestic worker was mistreated. 

 

Despite working for a Malaysian employer for more than five years, she wasn't paid a salary or given a day off.
 

When the employer finally did pay her off but not before getting her agent to get rid of her back to her own country.
 

The agent unbelievably forced her to swim to the boat. Unable to swim, she struggled for her dear life in the sea and somehow made it back to land and to a shelter for domestic workers.
 

Migrant workers in our country really ought to be treated better by allowing their personal passports to be held by them instead of the employers, get one paid day off, and have their salaries put into their personal bank account each month, among other things.
 

A bit of good news now. Many persons with disabilities and the elderly are glad that the question put forward by the government about whether or not pharmacies should be the only ones to dispense medication has been put off for now.
 

What a relief. Patients can continue to get their medication from their doctors after visits to their clinics – and not have to look for a pharmacy elsewhere to get them.
 

For disabled people, sometimes it is more pragmatic to go to the nearest clinic to your home for quick help. These include for emergencies like a fever, stomach upset or a migraine.
 

And some kind doctors will even go as far as to entertain their wheelchair patients on the phone. I know of several who will even step out from their clinics and attend to you in your car.
 

This makes it a whole lot easier than attempting to get into their private clinics which often lack wheelchair access.
 

One of the issues foremost on many disabled Malaysians' minds is the goods and services tax (GST) which was imposed on all Malaysians about six months ago.
 

People with disabilities, was the GST waived, pointing out that it is a further and unkind strain on their living and quality of life. They are asking the government to provide the waiver through their disabled identification provided by the Welfare Department.
 

This is something some key groups for the disabled plan on doing by meeting up with the Women, Family and Community Development Minister Datuk Seri Rohani Abdul Karim in early 2016.
 

Fingers crossed everyone, and have a happy new year. – December 28, 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/the-good-the-bad-and-the-ugly#sthash.L4i3AGPw.dpuf

Christmas and the disabled

This Xmas, think of 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: 21 December 2015

 

It will be Christmas again this Friday.
Here’s a quick checklist on the things that we can do to include and involve people with disabilities and the elderly in order to make the festivities meaningful to them.
 

At church
Midnight mass on Christmas Eve or Christmas service on Christmas Day is a must for those celebrating the festival. There is no excuse or reason to exclude celebrants with disabilities and the elderly from taking part in the festivities.
 

Families with loved ones in wheelchairs or use walking aids should make the extra effort to bring them along to church, Christmas dinners or parties.
 

Even if they initially refuse, some encouragement will do a lot of good, especially if they have been cooped up at home for a long time.
 

There is nothing like a change in surroundings from the mundane to do wonders for the soul.
 

Some advanced preparations may be necessary though. Things like checking to ensure that the wheelchairs and walking aids are working properly and even calling up the church to enquire about their access conditions for wheelchairs and seating arrangements for the special day.
 

Parishes should ensure that wheelchairs and walking sticks have unimpeded access into the building as no one likes to have to apologise to those seated to make way for wheelchairs and other parishioners with disabilities.
 

It is a clever idea to place the disabled in the front of the sanctuary or the stage so that they have the best view.
 

However, we should be mindful that this may cause them to be separated from their loved ones. So a good rule of thumb would be to ask them where they prefer to be seated.
 

Of course, in every situation, the disabled should be placed nearest to the wheelchair-friendly restrooms. As church events can be long, they may need to make several trips to the loo.
 

Some of them may require an able-bodied helper, especially for longer distances and churches should be sensitive to such needs.      
 

Disabled-friendly toilets should be kept clean at all times and equipped with all the necessities, such as toilet paper and others.
Churches, which have yet to provide disabled-friendly facilities from ramps to toilets, should really be ashamed of themselves for denying a basic right to a community that needs them.
 

Giving the lame excuse that they are no disabled people in a particular church or that there was no need to as “God would heal disabled people” is really an insult to all the disabled in society.
 

On the contrary, the number of disabilities is only increasing daily rather than decreasing as we all move into an aging society.
 

Besides persons with physical disabilities, there are other categories of disabilities, too, which churches and religious buildings should look into.
 

The blind require braille materials to be able to follow the printed word. Thus, hymnals, songs projected overhead and church bulletins should also be made friendly to them so that they can fully participate in church life and activities.
 

Deaf members need a sign language interpreter. The latter provides a professional service which should be paid by the church.
 

Children and adults with learning disabilities would also greatly benefit from Sunday school classes which provide a special education teacher who is trained to communicate with special children.
 

Not all churches provide such facilities in their services. It is really high time that they do.
 

Outside church
There are many things which can be done outside a church environment to bring on the Christmas spirit to the disabled and the elderly.
 

Youth groups from churches could pay home visits to elderly persons who are bedridden.
 

Many have little opportunity to go out because they don’t have strong people to help them out of their beds and into their wheelchairs.
 

Young people can play a positive role by taking them out to the park for a stroll and getting to know them.
 

The two or three hours spent with the elderly will also serve to give a much-needed break to his or her regular caregiver who is frequently someone in the family.
 

Inviting the disabled out to lunch or dinner or to one’s open house is also a good thing. Many disabled people are just waiting for such opportunities but are too shy to ask.
 

Offering to read to the blind is another splendid way to spread some yuletide cheer. Have some extra tickets to the latest Star Wars flick?
 

How about doing something totally different and inviting a disabled person to accompany you?
 

I can assure you that it won’t be the movie alone which will be enlightening. The experience of doing it together with a disabled person will most likely be an experience you will never forget.
Happy Xmas everyone! – December 21, 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/this-xmas-think-of-the-disabled#sthash.tyRj19wn.dpuf

Wheelchairs make a difference

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: 14 December 2015

 

Most people think that wheelchairs signal the end of the road for anyone who ends up in them.
 

Nothing can be further from the truth.
 

The term, “wheelchair-bound” is often wrongly used by the media when describing a person in a wheelchair.

The actual truth of the matter is wheelchairs are wonderfully liberating for a person who is paralysed. Without one, he or she is unable to get out of their homes and interact with the rest of society. Wheelchairs are a key source to happiness, acceptance of disability and living. They present opportunities to the disabled to find jobs so that they can support themselves.
 

Wheelchairs also bring about love and romance.
 

Last week a committee member from the Independent Living and Training Centre Malaysia (ILTC Malaysia) in Rawang, Selangor, who uses a wheelchair decided to tie the knot in marriage with her boyfriend who also uses a wheelchair.
 

The couple who contracted poliomyelitis during their childhood met at the disabled centre a year ago where love blossomed at once.
The fact that they were also long-time wheelchair users helped them to understand their needs a whole lot better.
 

In addition to their wheelchairs, the couple also use callipers and crutches to get around. These walking aids also call for further patience in the extra time needed in the special circumstances that they are in.
 

No one, however, were more thrilled to see the couple share their lives together than their able-bodied parents and siblings. It was a miracle come true through their prayers, said their beaming loved ones.
 

All that is left now to do is for the Kuala Lumpur City Hall to make the venue where the hubby intends to set up his fruit stall disabled friendly.
 

The public toilet needs more room to accommodate his wheelchair and a ramp is needed in place of a step to his stall. The wife already has her job as a government clerk in KL.
 

Meanwhile, the 15-year old ILTC Malaysia is set to open its doors to its new disabled centre in Rawang soon. It cost nearly RM1 million and four years to build.
 

It plans to reach out to more disabled people in the rural areas with its two dormitories with 30 beds.
 

ILTC Malaysia is run by disabled people with the firm belief that it is disabled people who best understand their own needs.
It provides residential care to paraplegics with spinal cord injuries and amputees.
 

Newly disabled persons are taught daily living and social skills. They are also taught the computer, sewing and how to ride a three-wheeled motorcycle.
 

The new ILTC Malaysia's gymnasium provides access to some of the latest equipment in physiotherapy and exercise.
 

One of the chief goals of the Rawang centre is to find jobs for those who enrol with them throughout the country. Every effort is made by ILTC Malaysia to furnish additional skills to its members to help bring this about.
 

“Those who need our support the most are accident victims, they are often in a situation where they literally have to pick the pieces of their lives and start living again,” said Francis Siva, president of ILTC Malaysia and a tetraplegic since 1986.
 

I think that ILTC Malaysia and others which follow in its footsteps are playing a pivotal role in helping make a difference in the lives of the disabled poor in our country.
 

The Welfare Department (JKM) should really start working with non-governmental organisations (NGOs) like these with financial and technical support.
 

For further information, ILTC Malaysia can be contacted at 03-6093 6292. – December 14, 2015.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/wheelchairs-make-a-difference#sthash.xCIR332m.dpuf

Making a special day meaningful

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: 7 December 2015

 

International Day of Persons with Disabilities (IDPD), which fell on December 3, was marked with a number of interesting events that took place not only in Kuala Lumpur and Selangor but throughout the nation.
 

And although I was not able to be present for all of them, I was, nonetheless, filled in on what transpired in the activities from my disabled chums who attended them.
 

Here are highlights of some of the best of them – plus points for further improvement to consider when organising follow up programmes.

A local hospital in KL held a two-day IDPD event which included a forum, exhibition and activities. 

 

This was good because IDPD occasions often gave hope for persons who became permanently paralysed from accidents, illnesses and old age. 

 

I was sure that patients in the hospital who were still struggling in accepting their new life of disability would have found it a little more convincing that life in a wheelchair was not the end of the road for them.
 

Furthermore, witnessing former patients getting on with their lives at home and interacting with them in the event would have made a world of difference to them. These things always do, although the results were often not immediately felt.
 

Having said that though, perhaps the organisers might want to consider moving away from a hospital setting next year and have their IDPD in a more “normal” setting?
 

How about having the event in a popular shopping complex, watching the premier of a blockbuster movie, visiting a park or even the zoo?
 

Although it should not, but hospitals still spook many people. Nobody wants to be branded as a “patient” forever. Exposures to the above venues can be followed up by getting the patient to talk about their feelings and experience.
 

It would also be an eye opening opportunity for the medical doctors and staff to be able to interact with their patients in a non-medical environment.
 

I hate to see handicapped people portrayed in a negative light which our local television tends to do a lot. The saddest of tunes are aired when there is a person in a wheelchair.
 

The worst scene is when a doctor tells a distraught family waiting to hear the condition of their child that although he will survive, he was going to be paralysed for the rest of his life.
 

The doctor was implying that it would be better for the child to have died than to live life as a person with a disability.
 

I was glad to see Astro's Tamil channel Vaanavil move away from such negative perceptions when they invited a disabled guest to speak live on IDPD.
 

The handicapped gentleman, who was paralysed from the neck down, told his story of how he struggled with his disability after a head on collision of his car with an oncoming lorry.
 

He confessed live on air on how he attempted to take his life several times but was fortunately unsuccessful at it. It was not until he met other disabled people like him that challenged him to pick up his life again.
 

Today, he runs a self-help centre that is dedicated to helping other people like him. 

 

It is these kinds of stories which our Malaysian society needs to hear when it comes to people with disabilities.
 

And broadcasters can play a pivotal role in helping to change the negative perceptions that some people currently have about disability.
 

Finally, the Welfare Department (JKM) held its IDPD celebrations at the Putra World Trade Centre in KL. 

 

As usual, awards were given out to disabled persons for their personal achievements.
 

Although recognition like this for disabled Malaysians is most commendable, JKM should cast a wider net in future occasions to include ordinary people as well instead of only academics or highly talented persons.
 

I am talking about simple disabled Malaysians who lead extraordinary lives by being the breadwinner in their families. I am thinking about a disabled woman hawker I met who runs her own humble food stall in Petaling Jaya.
 

Because of the location of her stall, she had to leave her parents in KL and rent a room nearby from where she wheels herself to work every day, come rain or shine.
 

Although she did not have a chance to go to school, JKM should create a category for people like these who are doing their darndest to eke out a living against the odds.
 

Quite a few of the disabled guests at JKM's event complained that the food was not served on time, causing them upset stomachs because of their medication.
 

JKM should consider serving food promptly. There were also no able-bodied volunteers to welcome them and assist them into their wheelchairs.
 

The ones who faced the most difficulty were those who were directed to the underground parking which was deserted.
 

JKM, please consider hiring volunteers if you were understaffed.
After all, this was their special day. – December 7, 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/making-a-special-day-meaningful#sthash.8ZXzZMNs.dpuf