Disability, a ‘death penalty’ after 50

I had a wonderful time last Wednesday. It was International Day of Persons with Disabilities or IDPD.

The first IDPD was announced in 1992 by the United Nations.

Now, nearly quarter of a century later, there are more than one billion disabled people in the world. This makes persons like me and others officially the largest minority group the world over.

According to statistics by the UN, the majority of us live in developing countries, which we are a part of.

As a person born with a disability - and having successfully made it to 53 years of age last month - my work in advocating for the rights and welfare of disabled people over all the years have showed me one most important thing.

And that is, the best way to change the world for the handicapped is through sensitising the non-disabled public about what persons with disabilities have to go through every day of our lives.

This is especially so because the disabled live in a society which, largely and frankly, was not built with our special needs and rights in mind.

Raising awareness was exactly what I found myself doing on the morning of IDPD.

My day started with a live phone-in interview on TRAXXfm.

The station's presenters Roundhead and Mary rang me up on my mobile phone at a quarter past 9am. I could picture listeners at home, and on the roads, driving in their cars and listening in to us.

Our chat, around five minutes or so, was also followed on Twitter and Facebook.

I tried to cover as many issues as I could, with the golden opportunity that I had in my hands, to speak to the nation within the short time span.

We spoke on technology for the disabled in helping to give them an improved quality of life, which is this year's IDPD theme.

I lamented about the fact that most of my wheelchair friends still had no access to computers.

"It is sad that IT fairs still focused more on the able-bodied than people with disabilities," I said, as the deejays listened intently and nodded.

"Internet service providers should also stop being selfish by giving discounts to disabled subscribers - only to limit their use afterwards, compared to features which are plentifully available to non disabled users," I added.

TRAXXfm also asked me about the thorny subject of non-disabled drivers abusing disabled car parks.

It was a great chance to remind everyone to never use a disabled car park, unless they are handicapped.

"Even a minute or two taken up by an able-bodied driver is hell for the disabled driver, who may never find a parking spot again.

"We would like to think that Malaysians are a 'caring lot'. However, the truth of the matter is, the moment we get into our cars, we forget everything and everyone. It's each man for his own, after that." 

On the bright side, it is good to see members of the public taking positive steps to post pictures of the offending vehicles with their number plates on social media to shame them.

One US disabled activist wrote on my Facebook that when such a thing happens in her country, the drivers usually have their cars promptly towed away and slapped with a hefty fine.

"If that doesn't happen, they may very well find their tyres 'mysteriously' deflated," she wrote.

After the interview, I had to rush over to give another talk on IDPD in Kuala Lumpur that very day. But not before getting my best able-bodied pal, Andrew Martin, to pop by over to my house a couple of hours before the event to help me get dressed for the occasion.

First in the bathroom, and then to wear my pants and shirt. The task was completed with my socks and shoes.

At times like these, I wish our government would provide us with "personal attendant care" workers like they do in overseas countries.

It is also catching on here in Asia.

Even international agencies like the World Health Organisation has urged developing countries to get their act together in providing such a service in preparation with the numbers of elderly persons growing at an alarming pace. 

Personal attendants are paid by the government to assist the disabled in daily living chores in the house. They will help cook your meals for you, give you a bath, and even wash your clothes, if you are unable to do it for yourself.

And there is no charge for this.

When I brought this up directly to a welfare minister (who is no longer there now), she just laughed it off and reminded me that "Malaysia is not a welfare state". She said it in a disapproving tone, sounding almost disgusted with the idea. 

It's easy for her to talk because she is able-bodied.

She is not caught in the same predicament as that of the increasing numbers of physically disabled Malaysians who are ageing, and have no one to turn to for help.

For them, more so for those from poor backgrounds, it is an unimaginable nightmare when their parents pass on, and there is no one left to look after them.

The Welfare Department is currently looking into such paid caregivers for NGOs for the disabled.

But they told me they have not started yet to look into the needs of individuals who live on their own or with their families.

Until then, living above the age of 50, will be a virtual "death penalty" for everyone, as experts warn all of us will have a disability or two when we grow older.

So, I guess the answer is: "Let's all stop growing older!" – December 8, 2014.

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.