Empowering Through Consumerism

The Independent Living Movement subscribes to the philosophy of consumerism. Practitioners of Independent Living want to be consumers of the services that they require. As consumers, they have the ability to control the standard of service and goods provided. This is a paradigm shift from the traditional mindset of disabled persons being the recipients of charity, welfare and volunteerism.

When it comes to charity, the recipients are mostly in a position of passivity. The assistance provided are often according to the perception of what the benefactors think disabled persons need. The perception may not always be correct. The recipients do not have a say in what is given to them lest they be deemed to look at a gift horse in the mouth.

In Malaysia, we have not reached a stage where all disabled persons can practice consumerism due to economic factors. When they are not gainfully employed, they have to depend on the mercy of their family and carers for all their needs. In such circumstances, they are not in a position to dictate what they require.

It is a vicious cycle. In the end, this group of people are reduced to a state where they have to accept whatever that is dished out to them, whether they like it or not. They lose their dignity and the ability of self-determination. What is the value of life then? They not only are prisoners in their own bodies but trapped in a society that sees them as charity cases and nothing else.

The burden of caring for them should not fall solely on the family. The state must play a major role in ensuring that their rights and dignity are protected. This can be achieved by first making available a range of support services and aids to assist them in their daily living. These all must consumercentric services where they have the final say in how they want it provided.

Nobody likes to be compelled to accept goods and services that do not conform to their standards. Likewise, disabled persons should not be obligated to accept the same. We, as a society, must move away from viewing them as perpetually helpless people needing welfare handouts to providing them with opportunities that can empower them to lead fulfilling lives. Consumerism is the way to achieve that.

I was busy over the weekend and will be busy until tomorrow. A week or so ago, Professor Lenore Manderson asked if I was interested in attending a two-day seminar. As I would be relatively free on the days she mentioned, I thought it would do me some good to go and learn something instead of brooding at home. She had arranged with Dato’ Dr Zaliha Omar to pick me up early this morning. It was only when we reached Hotel Istana that I realised it was a workshop with a list of illustrious international speakers.

The Family Strengthening Workshop was organised by the Kementerian Pembangunan Wanita, Keluarga dan Masyarakat, Lembaga Penduduk dan Pembangunan Keluarga Negara in collaboration with LDS Charities and Majlis Kebajikan & Pembangunan Masyarakat Kebangsaan Malaysia (MAKPEM). Most of the participants were in formal attire and I was not! It was an interesting event nonetheless. There were five workshops. I picked Workshop 5: Crisis Intervention: Handling Neglect, Abuse and Violence. The speaker was Prof. Dr. Scott A. Ketring. He was very animated. He gave an interesting insight into the minds of people who have been abused and how they react.

It was a good thing I went. I met a sweet young woman outside the ball room. She introduced herself as Venus and blogs at Jaded by Venus. That was the second time we bumped into each other. The first was just outside the pet shop at Mid Valley Megamall a few months ago. Hi Juliana!!!! Just in case you were wondering, yes, I still remember you from the last time.

Give The Disabled Child An Opportunity To Grow Up

Who can blame a parent for being protective over a disabled child? More often than not, the child is mollycoddled; all his needs are looked after, sometimes to the extent of being overwhelming and suffocating. That is the basic instincts of parents at work.

Nevertheless, parents need to understand that as the child grows up, there is a real need to allow him to take charge of his own life. How long can the parents be there to protect the child? What will happen to the child after the parents are no longer around?

We certainly cannot expect the child to suddenly grow up and fend for himself. There are skills that are required for activities of daily living and skills needed for living independently. These have to be learnt over a period of time. Those skills may be second nature to many but for one who had been protected all his life, it would be as foreign to him as Greek.

Parents who really care for the wellbeing of the disabled child, no matter how old the child is, should gradually wean him off his dependency on them. This is the best legacy that they can leave their child with.

It is only through managing his own needs that the child regains a sense of self-reliance and self-worth. That confidence will in turn empower him to take charge of his own life, be responsible for his own actions and learn to be independent.

As it is, disabled persons are faced with more challenges than they can overcome. Parents should take the initiative to encourage their child to go out and face the world instead of keeping them away from the prying eyes of the public. Sooner or later, they will have to go out and face the world anyway.

The Honda City was booked in early August. Delivery was slated four weeks from the date of booking. The first thing that I did after that was to look for a hand control kit. Since I am unable to step on the pedals, I have to control both the accelerator and brake pedals by hand.

There are currently three versions of hand control kits that are being used in Malaysia. Only one is suitable because the other two needed good hand function that I lacked. I chose the one Christine is using because of its simplicity. One stick controls the brake and accelerator. It is attached to the steering column just behind the steering wheel. The stick is pressed down for accelerating and pushed forward for braking.

The hand control kit in Christine’s car.
Photo by Wuan.

Christine got her friends to help me get the hand control kit from Singapore. The kit manufacturer, Mobility Product & Design of USA, have two dealers in the island republic, but none in Malaysia. It cost SGD800 – around RM1,900. The other more commonly used kit costs RM2,800 plus installation.

I got the left hand control unit instead of the more commonly used control for right hand. My main concern was that the kit installed for the right hand could severely impede my entry and exit into the car. However, the left hand control kit presented a host of other problems too.

… to be continued.

Related entries:
Project Drive For Freedom - Part 2
Project Drive For Freedom - Part 1
Answer Me This
First Step Of Another Journey
Test Driving The Civic
My Dream Ride
Reclaiming My Life

Around the time that Wuan and I were on the lookout for a suitable car, William and Cynthia were also doing the same. We were seriously looking at the Proton Waja Campro 1.6. The put offs were the flimsy setup and ridiculously low resale value.

They booked a Honda City instead. The exterior of the City is not a pleasant sight. It somehow does not look proportionate. In short, it is an ugly car. The other choice would be the Toyota Vios. I dislike the Vios for the odd placement of its meter clusters which is smack right in the center of the dashboard instead of on the driver’s side.

Wuan was very keen on the Kia Citra. She wanted a car that she could put my wheelchair into easily. The problem with the Citra was that the doors were very small. There was no way I could get into the car no matter how I tried.

In the end, we settled for a City too. I reasoned to Wuan that we would be spending more time inside the car than outside weeping over it hideousness. The interior was nice though. It more than made up for the shortcoming of its looks.

The plus points were the very adjustable steering column and the ample boot space. When the steering wheel was set to its highest position, I could get into the car, legs and all, very comfortably. The boot was large enough to accommodate my wheelchair without the need to remove the leg-rests.

… to be continued.

Related entries:
Project Drive For Freedom - Part 1
Answer Me This
First Step Of Another Journey
Test Driving The Civic
My Dream Ride
Reclaiming My Life