Be thoughtful when you visit homes were disabled people are

Sensitivities to observe when visiting the disabled and elderly

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 March 2015

 

When it comes to spending festive occasions and holidays with our loved ones, most of us immediately think of attending open house visits.
 

If it's not that, then it is probably that perfect opportunity to make some time to catch up with long, lost old friends in our favourite cafe – or doing whatever it is to have a good time.The recent Chinese Lunar New Year was a good example.
 

However, when I called a good friend of mine last week to ask her how she had spent her holidays with her family, I was left speechless! I couldn't help noticing her having a delicious good chuckle as she related her story.
Margaret has two disabled persons in her home: her young son and his aging grandmother. With both of them having to use wheelchairs in order to get around, welcoming the Year of the Goat – or any other animal signs in the Chinese zodiac calendar for that matter – can be challenging and complicated, she told me. For instance, when her friends started their festive spring cleaning, she decided to give it a miss. As a result, Margaret received endless comments and questions from visitors to her home on why her ceiling and fans were not in a spick-and-span state to their expectations?
 

My friend's amusing and witty answer to them was there was no need for any "extras" as scrubbing and cleaning are what she does daily anyway, to make her home liveable and happy.
 

There is a mat on the floor in her living room all the time for her son to rest on. Special rehabilitation toys are also placed there for him to play with. Nearby are his stroller, walker and other equipment.
 

Whilst those without disabled children may find them "untidy" and may want to put them away, it is part of Margaret's child's daily life for instilling creativity skills in the lad. They need to be accessibleto the boy all the time.
 

Visitors to her home are forbidden to check out the store room in the house just in case they go into "sudden shock" upon discovering Margaret's collection. It's filled with wheelchairs, strollers, walking and standing frames, as well as household stuff like old newspapers.
 

Having two members with physical disabilities going out on visits to loved ones and friends is quite a task. As a caregiver, there are time limits to observe.
 

One needs to be sensitive as to how long before the disabled visitor tires from the visit and needs to get home. If you are away from the handicapped person for a while, you need to know when your time is up and you need to return home to him. 

 

And when you are with them you need to stay focused on the person you are caring for.
 

With such constraints, it made more sense to have the non-disabled relatives and friends come over instead. However, visits during meal times, rest and bathing and "toilet time" are best avoided.
 

Grandma, for instance, has become incontinent. She, however, refuses to wear a diaper. And it isn't easy to force an 80-year-old to do something which she is not used to doing. Even the doctors and nurses found it hard to make her wear one when she was hospitalised. So there are times where "accidents" occur.
 

Friends and relatives should understand situations like this, when they are paying visits to elderly persons.
 

Festivities always signal the abundance of food. Like all of us, the temptation to overeat or eat something which is unsuitable happens. For grandma, this can either end up with super low or super high blood glucose counts which causes her to feel giddy. Things become more complicated with loose bowel movements and diarrhoea.
 

When visiting people in such conditions, it would be tactful not to mention how someone's room may smell or look, considering their vulnerabilities and never forgetting that your roles there are as guests of the home.
 

Those playing with fireworks and firecrackers should have some consideration of how the loud sounds and bangs affect children and animals. Margaret says they are never allowed in her home. 

 

Her son gets terrified of the sounds. It wakes him up from sleep and starts crying and doesn't go back to bed until several hours later.
The insufficient sleep even makes him go into seizure attacks. The loud sounds goes on almost daily for about a fortnight, making sleep a nightmare for the boy. 

 

On top of this, she also has to calm down her two pet dogs who are equally terrified by the firecrackers.
 

So this is how it was for Margaret and her family and how they managed to cope and survive during the holidays.
 

Despite what she has to go through every day in her life, she is never one to complain about it. Margaret says she just wants to make people understand that if you are living with people with disabilities, there are certain challenges – as well as sensitivities to look out for – which people go through in life that require some special understanding and support.
 

Although Margaret herself has been suffering with some persistent back pain lately, she says she enjoys cooking, eating, entertaining people and meeting new friends. Then there are always those moments when she enjoys a cuppa over a nice comedy on television, or have a few friends over with food from the shops in order to chat and laugh away a couple of hours, especially when there is a holiday.
 

Otherwise, it's on the daily go for appointments and regular follow ups in the hospital, therapy centre and her son's special school. – March 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/sensitivities-to-observe-when-visiting-the-disabled-and-elderly#sthash.j3s9hqsU.dpuf

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

No to pharmacy dispensing

Getting a wrong thing right

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: 2 March 2015

 

There's a new problem in town lately. Whether or not it will be a real one, is left to be seen. And it isn't only my disabled friends who are worried sick over it.
 

It's regarding all this talk on the media – both in the electronic and printed press (as well as in the social circles) – about whether or not pharmacies should be the only ones to dispense medication.
Currently, the practice here is patients can get their medication from their doctors after visits to their clinics.

All of my able-bodied friends whom I talked to, don't think that passing over that sole responsibility to the pharmacies is a good idea at all. It's already bad enough, they say, to have to crawl out of bed when one is terribly sick in order to go and see a doctor.
And when they finally do, all they want next is to get the consultation session all over with.
 

Then, quickly grab their medication – and get home as fast as their feet and cars will take them, in order to try and sleep the whole thing off.
 

But it would be nothing short of a nightmare, they say, if their trip doesn't end at the clinic.
 

The dreaded thought of having to go and look for a pharmacist afterwards, in order to complete their doctors' visits in packed towns and cities with scarce parking around would be enough to make them even more sick than when they started their day.
 

For people with disabilities, it's horrendously worse.
 

It is true that disabled people usually go to government hospitals for regular checkups. However, if you think that the experiences they face are a "bed of roses", you are very mistaken.
 

One of the chief problems is finding a disabled friendly car park.
Wheelchair user S Jeyaraj from Rawang, who makes frequent visits to his specialist, points out that disabled car parks which should be totally convenient to disabled patients often never are.
 

"Not only are our car parks abused by the able-bodied, but they have no shelter (unlike the able-bodied hospitals' directors') to protect us from the sun and rain," he laments.
 

Other issues include steep ramps, excruciating waiting hours, and lack of physical help from hospital staff when patients have no choice, but to come without a friend or family member to help them.
 

Sometimes it is much easier to go to the nearest clinic to your home for quick help. These include for emergencies like a fever, stomach upset or a migraine.
 

Some kind doctors will oblige wheelchair patients by entertaining their phone calls. They 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 private clinics which often lack wheelchair access.
 

When compared to a government hospital, at least the disabled are able to get to some sort of emergency help faster.
 

It's not unusual for a disabled patient to be ticked off by a doctor in a government emergency centre for not seeing a doctor during the regular hospital hours instead of turning up for treatment during off hours where emergency cases are a priority.
 

A noble point, but sometimes disabled people find it hard to get their families to accompany them during their own commitments, and thus can only come when their helpers are free. Hospitals should make some room for these situations.
 

As for non-wheelchair accessibility, local councils have also to take the blame. Clinics and banks are great places to start with sheltered car parks, along with the necessary wheelchair ramps.
 

Excuse me, but isn't this already an obvious thing for our governments to do with an increasing disabled and elderly population?
 

Pharmacies, if you ask me, are no better. There are many pharmacies which sell wheelchairs, but provide no wheelchair access whatsoever to users who visit them to buy their products, whether they be persons with walking difficulties, wheelchair users or the elderly.
 

Often their wheelchairs are kept upstairs and out of sight. Potential buyers are unable to physically test them out before making a purchase, even though some of them can cost RM1,500 and above.
 

We are showed pictures of them in brochures instead.
 

This also goes for medications and other types of products.
Instead of being able to get right to them where I can see and examine a whole array of selections in order to make a right choice, I am forced into a situation where I have to depend on a salesperson or shop assistant to bring them down to me.
 

They usually don't bring them all down, but what they think are the "best three", even though they have no clue as to what I need.
 

Then I am forced to make a decision, even though I am dissatisfied with them, because I feel "guilty" for having made them walk up and down for me for the products.
 

A customer in a wheelchair should never be subjected to situations like these which is wrong and unethical.
 

Shouldn't it be their moral and social responsibility to provide wheelchair friendly facilities to us, especially as disabled people, we are often the end users of their products from which they make good profit?
 

Also to the fact that we will keep coming again and again as repeat buyers?
 

On the subject of medication, there have been times when a pharmacist had suggested another medication which he claimed was an "improved product" instead of the one prescribed to me by a government doctor. It was for a particular pressure sore that I had.
 

There was no way where I could call up the specialist there and then to check if the cream suggested by the pharmacist was "better" for my wound instead.
 

Weeks later when I met the specialist on my appointment day, I was told that the one recommended by the pharmacist was a wrong one and that I should stop using it at once as it was eating away at my skin.
 

In conclusion, the planners and policy makers should spend more time in urgently and significantly working hard to get such basic wrongs in our society and infrastructure RIGHT before thinking of any outlandish measures for the next generation. – March 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/getting-wrong-thing-right#sthash.wT3wT8c5.dpuf