Making The Effort

Making the extra effort

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: 25 January 2016

 

Nearly 200 persons – a large number of them People diagnosed with Parkinson's and their caregivers – filled up the hall of the Petaling Jaya City Council's (MBPJ) community library recently.
The purpose of this was to focus on their disease – and at the same time to learn new and latest tips on how best to stay on top of their conditions.
 

The four-hour event, held on the 16th of this month, was put together by the Kuala Lumpur-based Malaysian Parkinson's Disease Association or MPDA.

For the benefit of those who are not aware, Parkinson's is a movement disorder that affects mobility of the person as the condition progresses. 

 

The national NGO has been serving Malaysians with Parkinson's in the country for more than 20 years.
 

Here's why I think that this event was most extraordinary.
 

The room was filled with most of the right people.
 

Almost 80% of the 180 participants present at the MPDA session were persons with Parkinson's themselves.
 

If it was not them, it was their caregivers made up of husbands, wives, sons, daughters, relatives or a close friend who accompanied them there.
 

How often have we as disabled activists attended events organised for us and then much to our chagrin afterwards, find out the target group, that is, the handicapped not there?
 

So clearly credit must be duly given to the MPDA organisers for going all out to ensure that persons with Parkinson's and their loved ones turned up.
 

Wheelchairs and walking aids, as we know, are not the easiest things to carry around – not when we live in a society which had totally forgotten about the handicapped in our infrastructure.
But thank God that it did not stop the MPDA from doing their best to bring in as many persons with Parkinson's as they could.
 

Those that came were in various stages of the disease.
 

While most of them who were invited were able to walk, some others felt more comfortable to bring along their wheelchairs and walking canes. Because I myself use a wheelchair, I can appreciate how having a loved one around would have been a great relief for the latter.
 

This, in case we suddenly encountered a step in a building which our wheelchairs can't negotiate. 

 

Or what if we had a sudden attack of symptoms that required medication there and then?
 

Our close friend or loved one would know exactly what to do to help us.
 

I wish to point out that not all NGOs for the disabled bother to go through such details when things are organised for us. They just expect us to turn up without bothering about how we are to get there or checking if the bathrooms are disabled-friendly.
 

I have been told once or twice quite flat in the face to wear an adult diaper and "do your business in it if you have to."
 

Speaking of disabled-friendly restrooms, the MPDA scored top marks because it was available right next to the hall. MBPJ also deserves credit here for renovating their toilets to provide the facilities. 

 

Previously it had not been available.
 

The majority of people with Parkinson's were in their 60s and 70s while others in their fifties. The younger group were diagnosed with the condition as early as in their 40s.
 

Needless to say, the organisers didn't forget to invite the important "others" for the event. These include health professionals and members of the public who were interested in the topic.
 

Heads of other Parkinson's NGOs also turned up. They included one from Terengganu and also Sibu, Sarawak.
 

The main highlight was a talk on exercise and brain change.
It was presented by Dr Claire McLean, an international expert from an organisation called Parkinson Wellness Recovery, USA.
 

She left her audience totally captivated during her three-hour talk where she presented useful and much-needed tips for persons with Parkinson's on how exercise can be used as a treatment for motor, cognitive and emotional symptoms of Parkinson's disease.
 

Dr McLean illustrated how exercise can be used as a first line of defence against Parkinson's based on research evidence.
Many, if not most, persons with Parkinson's not only already know about the importance of exercise to their well-being but are already engaging in it.
 

However, now having personally listened to a top expert share new and supportive facts about its benefits will no doubt motivate them to work harder in their own exercise regimes and never give up.
During the second part of her talk, Dr McLean went further to illustrate specific exercises which persons with Parkinsons can and should perform in order to bring about necessary brain change.
Some of the exercises were so practical that they can do it while remaining seated or standing up.
 

A quick note of improvement here on wheelchair parking: Instead of the only one disabled parking available at MBPJ's community hall (which is nearer to the library than the actual hall, the council should add at least another one or two slots to cater for more handicapped people).
 

In conclusion, bravo again to MPDA for all the trouble and pain you took to ensure that your event was as comfortable and friendly to your members with Parkinson's disease and others.
I think that there is a lot that other NGOs can learn from your wonderful example. – January 25, 2016.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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Tips on fine-tuning disabled transport

Fine tuning disabled transport

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.

Anthony SB Thanasayan

Published: 9 March 2015

 

It was sweet music to the ears of residents with disabilities in Shah Alam, Selangor, when a local daily last week reported that the City Council (MBSA) is now providing free transport services for handicapped people.
No one jumped for joy at the news more than persons with physical and walking disabilities, whom this facility is all about.
The services, provided by two vehicles, is now said to be running on weekdays from 8am until 5pm.

It is given free of charge, enabling and ensuring most disabled people can have unimpeded access to them – whether or not they are employed or can afford it. This is certainly money put to good use. The MBSA deserves high praise for such a move.
By doing so, it successfully places itself among the ranks of being the second local council in the state and nation (next to the Petaling Jaya City Council or MBPJ) – to provide such a facility in the city.
This unique service will effectively reach out further, and deeper into the disabled community to serve those who desperately require it.
I'm referring to profoundly disabled persons who are virtually stuck to their beds and can't get out of their homes.
They find it more difficult to do physical transfers, and thus are unable to use conventional transport like cars and taxis to get around.
The van which MBSA provides is an excellent alternative.
It is able to take them in, complete with them sitting in their wheelchairs. They get in on a special built-in lift from the back of the vehicle. No need for abandoning their wheelchairs and shifting their bodies onto the van's seats are required.
Having said all this though, in order to make their services top class to its handicapped users, MBSA needs to look into the following.

• Prevent abuse and promote education: Ensure that the van service is being used by the poor and not the rich. Domination by the rich who often have alternative means of transport defeats the purpose of a van service to help the needy.
  MBSA should conduct publicity of the van's services in all the poor areas of Shah Alam. Leaflets in a variety of languages should be distributed to the various communities and NGOs helping them. Even passing them on to mosques, churches, temples, hospitals and clinics is a good idea in making sure the message is spread out to as many people as possible.
  The best approach is to be able to speak to the disabled directly. However, this is not easy as many of them seldom come out, thinking that "their lot in life" is to "stay away" from the public eye. Some disabled people I know simply refuse to use the facility thinking that they should leave it for other "more deserving cases" who need them. These people need to be educated that using the van is their right.

• Education for van drivers: Be sure to select the right drivers; and not anyone for the job. They must be gentle and kind and with heaps of patience. They must also be sensitive to the needs of the disabled.
  Turning up on time at the disabled person's homes and venues is a must. Waiting and extra five minutes or so, is divine on the driver's part.
  Drivers need a basic course on what disabilities are. Put them in a wheelchair or on crutches and drive them around for a week in order to let them know what the experience feels like. Invite wheelchair users who are qualified to do the training.
  Be sure to recognise the work that these special van drivers do – and never forget to reward them from time to time.
  Having said that, there must be a confidential number for disabled people to call and complain – if they are mistreated. Complaints must be taken seriously.

• Safety a top priority: Wheelchairs must be strapped at all times with the provided four safety belts for each wheel. They must be fastened securely at all times, even though a trip may sometimes last a few minutes. In addition to wheelchair belts, a safety belt for the disabled person must also be fastened. (A friend of mine died in an accident when she was thrown out of her wheelchair because the driver had not put on the safety belt to secure her in her electric wheelchair.)
  Disabled vans should never speed on the road when there are disabled people in them. Great care on balance of the disabled person should be taken when taking a corner or riding over bumps. Prompt action should be taken against drivers that violate this. Appropriate grab bars should be placed in strategic points for passengers with disabilities to hold onto for safety. Old ones should be promptly replaced.

To find out more about MBSA's van service, please call: 03-5522 2735. – March 9, 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/fine-tuning-disabled-transport#sthash.FbnNG6r7.dpuf

Making it easier for disabled people to use disabled car parks

Making life of the disabled easier

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.

Anthony SB Thanasayan

Published: 16 February 2015

 

I read in a news portal last Friday how a local council had towed away a car belonging to a senior disabled citizen.
 

The incident happened in Klang, Selangor.
 

The "bad guys" purportedly were the Klang Municipal Council (MPK) officers. The "victim" was a 65-year-old, who had polio and uses a wheelchair to move about.  

According to the report the incident happened outside the bank. The man's car was duly parked in a handicapped parking slot provided by the municipality.
 

What went wrong was that the car had no wheelchair logo displayed on it. It was apparently driven by the senior man's able-bodied son.
 

Both must have thought that coming to the bank in a wheelchair was enough "physical evidence" to prove one's disability status.
 

But it wasn’t enough.
 

MPK's enforcement unit promptly towed away the car. Even though, according to the story, the son had run out of the bank and tried to explain to the officers that his father was still inside the building.
 

Apparently MPK was unrelenting. The fact that the father had turned up at the office to prove that he was disabled, failed to tug their hearts.
 

As the story went, they ended up paying the fines: RM100 for wrongful parking and RM100 to release the vehicle.
 

As a former councillor of the Petaling Jaya City Council (MBPJ) for five years – and as a person who headed the council's disability committee – here are several things which I think could and should have been done to avoid the situation, and brought some amicable solution to the matter.
 

Disabled drivers: please ensure that you use the wheelchair logo signs both in front and the back of your vehicles at all times.
 

We often complain when non-disabled people steal our parking spots (and they are!). We blame local council enforcement officers for "sleeping on the job" and not taking action against them.
 

But how are we helping the situation? How are they to know who is disabled and who is not, if we confuse them by not using the stickers? The situation would not have happened if there was a wheelchair logo displayed on the car.
 

Disabled stickers: these should be made available only from MPK, not the Welfare Department (JKM) and not even the Road Transport Department. This would eliminate fraud such as someone purchasing one from a bookshop.
 

Disabled stickers should be issued only to people who have a disabled identification card. (This is to encourage more handicapped to register.) If they have none, it should be MPK's social and moral responsibility to assist the applicant to get one through JKM.
 

The stickers should be given free of charge to disabled drivers and renewed every three years or so.
 

Disabled stickers should only be given to people with physical disabilities, not the blind, deaf or others. MPK should decide if it is only for drivers with disabilities or those driving around the disabled or elderly.
 

(Keep in mind, if it is opened to the others – who can find alternatives with an able-bodied helper, it may deprive those who truly need the facility, that is, disabled drivers. In such a case, even more disabled parking spots will be required.)
 

Those with temporary disabilities, like in an accident or illness, should also be allowed to apply from the council with a government doctor's letter. It should be renewed monthly and eventually cancelled.
 

Awareness campaigns: in addition to the above, MPK and all councils should educate their non-disabled residents from time to time on how not to abuse disabled drivers' parking spots.
 

The programme should also include going down to residents' associations and seeking out disabled drivers in order to get them registered for the stickers. 

 

Sometimes home visits are necessary instead of expecting the disabled to turn up in offices. Or, even creating a "drive-in" in MPK's office is another extremely helpful method.
 

Note: in the case of the senior citizen, giving a discount will be a compassionate and welcome thing. It is never too late to do so.
Local councils or anyone working to help the disabled must always remember this: the goal is always to make the life of the handicapped easier, never harder. – February 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/making-life-of-the-disabled-easier#sthash.8qlFNx1j.dpuf