ST Supper Club with Nicholas Aw

From the Straits Times, 16 November 2013
By Goh Chin Lian

Part 1: ‘Let the disabled pay half price’
Commuters with disabilities are to get fare concessions on the bus and MRT, the Government said this week. But Mr Nicholas Aw, president of the Disabled People’s Association, wants them to pay half price. In Part 1 of this interview with Singapolitics, Mr Aw, whose advocacy group celebrates International Day of Persons with Disabilities in Singapore on Saturday, calls for taxi vouchers and a national registry to keep track of persons with disabilities.

Q: What’s your take on the concessions?
It’s very welcomed. We’ve been asking for this for a very long time. But we are curious as to who qualifies.

The definition of disability is very wide. Anyone can have a disability at any time. Does it apply to people with a temporary disability or who’s injured? Or only people registered with the Government or voluntary welfare organisations (VWOs)? Are those with mental issues considered to have a disability?

I’ve Tourette’s Syndrome. The group that I used to be with, the Tourette care group, says it’s a condition. But the Very Special Arts group in Singapore defines it as a disability. Whichever the case, the concession should include all persons with disabilities.

Is there a means test? Is it for the rich as well? It should be applied across the board, otherwise you have to go through a lot of paperwork which may be a challenge for persons with disabilities.

There are those who are well off, but the vast majority are disadvantaged because they lack access to education, information, accommodation and employment. For example, people with Down’s Syndrome can’t do some of the jobs abled people can do because of their condition.

There must be some safeguards so that the concession won’t be open to abuse. Carpark labels for persons with disabilities are often abused. There’s a blue label for persons with disabilities who drive, and an orange label for caregivers. There’s a time limit for caregivers, but people tend to abuse it.

How do you prevent this? Apart from abuse by abled people, there’s abuse also by the persons with disabilities or their caregivers. Let’s say you’ve a pass for the concessions. What if you lend it to someone else?

Even if these concessions are given, can a person with disability get on board the bus or train to enjoy the benefits? Many are wheelchair users. The route from their home to the MRT or bus stop can be a challenge because when they come to a kerb, there is no ramp.

Almost every MRT has one lift. The person on the wheelchair has to fight with abled people, the elderly and people with strollers for that one lift. A member told me he waited for an hour for the lift. Every time the door opens, they just rush in. Clearly they could have used the escalator.

I was with my son in a stroller at Gardens by the Bay. The lift is for people with strollers, the elderly or PWD. Two young couples just rushed in.

Staff manning the doors don’t know what to do if there’s a person with disability. When it’s crowded, do they tell the crowds to stand aside to let him through?

Are there standard operating procedures? Our members complain they can’t get on the train at peak hours due to people rushing in.


Q: How big a deal is public transport cost for this group?
In Scotland, public transport is free for those above 60 and people with disabilities. Malaysia gives up to 50 per cent off on trains. Australia gives taxi vouchers. The minister says the concession will offset any fare increase. How much less do they pay? It has to be at least 50 per cent – enough to draw the person with disability out of the house.

Many find it a hassle to take buses. They complain that the bus captains drive by and don’t stop, as they’d have to get down to engage the ramp. It might be a challenge for them to travel from their home to the bus stop, so they call for a cab. The cab fares may be half or three quarters of their monthly pay. So, make it easier for them to take taxis by giving them vouchers.

There are persons with disabilities, with mobility issues, who can drive. But the car has to be modified to suit their disability. The Government can subsidise their car by waiving the COE.


Q: Why do you think that tax payers should foot the bill?

You want to be an inclusive society. One day you’ll be old as well and you may have a disability. Someone will pay for your concessions. It’s karma: You give and you get back in return.

A lot of people with disabilities would rather stay at home because they can’t get out or if they get out, it’s very troublesome and they have to pay for bus, MRT or taxi. When they stay at home, you don’t see them. You don’t see that many people in a wheelchair on the MRT. But if you go for an event where it involves a VWO or a charity, there are a lot of wheelchair users.

I went for an event at a temple recently. The people in wheelchairs came by buses. I was astounded by the number of people in wheelchairs there.


Q: Why do you think the Government is now for concessions for people with disabilities, when it did not previously?
Apart from ratifying the United Nations Convention on the Rights of Persons with Disabilities, the Government probably recognises that it has to include everyone in their radar and ensure no one is marginalised because of its aim for an inclusive society.

They recognise we are an ageing population with many persons with disabilities becoming more visible in the population. For various reasons, we see a gradual shift towards more welfare-oriented policies.


Q: Why is a national registry of persons with disabilities needed?
A lot of people with disabilities are single or elderly with no one to care for.

You don’t want anyone to fall through the gaps. It may not capture everyone, but at least it’s a start to account for people with disabilities, and it’s a growing number because we are ageing. A lot of them suffer from age-related issues. They start using wheelchairs. They may not be disabled, but they stop walking.

Not all persons with disabilities will want to be registered with VWOs. Some may not be aware. The Government was giving out Goods and Services Tax (GST) credits, and they kept asking people to sign up at the ATMs. People didn’t do it because they were not aware of it. They do not have access to TV or newspapers.

Without accurate numbers and statistics, how does the Government plan policies related to disability? Even the Enabling Masterplan admits its figures for the total numbers in the disability community is an estimate, because no complete statistics are available, it’s all over the place.


Q: What do you think of the plan for all buses to be wheelchair-accessible by 2020?
It’s too long. I’m impatient for change. Maybe there are issues to be resolved that we are not aware of, but things should happen sooner than later because some of these people may not see the benefits after it is rolled out. A lot of them are very old as well.


Part 2: ‘We need laws to protect rights of the disabled’
Disabled commuters are to get fare concessions on public transport, the Government said this week. In Part 2 of this interview, Mr Nicholas Aw, president of the Disabled People’s Association, tells Singapolitics about Lamborghini drivers hogging parking spaces reserved for those with disabilities, and changing mindsets through a recent video campaign.


Q: What are the other transport issues?
Enforcement’s needed. There’s indiscriminate abuse of parking spaces set aside for persons with disabilities. People don’t care. The fine is too small. To someone who drives a Lamborghini, at Marina Bay Sands, it’s small change.

I’ve encountered people who just laugh about it. I call security. They’re afraid to enforce because no law requires them to do so. They’re afraid they will lose their customers.

Playground@Big Splash is crowded every Saturday. Three parking spaces are reserved for persons with disabilities. The security guard allowed abled people to park there. He said: “It’s very crowded.”

I said: “What if there’s a person with a disability? How is he supposed to park?” He said to me: “This is private property. If you’re not happy, call the police.” He’s got a point.

Even if I call the police, it’s private property, there’s nothing I can do. You’ve all the rules, but if you don’t have enforcement, they’re toothless.

Toilets reserved for persons with disabilities are often abused. People see a queue for the ladies, which is often very long. They go there and have a quick one. It happened at a concert organised by the Very Special Arts group. The Prime Minister was the guest-of-honour.

During the reception, I saw a person in a wheelchair waiting outside the toilet for persons with disabilities. I asked: “Who are you waiting for?” “It’s locked”. Then a person came out and he’s abled. Good grief. We’re at an event for persons with disabilities and you abuse the toilet meant for them!

We think no one is going to use it, so we can use it. If you use it, you open the door, you see somebody waiting for you in a wheelchair, where are you going to hide your face?

There are rules about guide dogs for the visually impaired going into food establishments. They’re often not allowed. In shopping centres, they’re accompanied by staff or security because they’re worried that the dogs will affect other customers. This is clearly discrimination.

We need to put bite into all these rules. I’ve recently written to the Prime Minister to consider legislation to protect the rights of persons with disabilities.

At the very least, it will protect them from abuse and enforce the measures that protect them. A person with a guide dog should not be subject to discrimination. Abled people who park at spaces reserved set aside for persons with disabilities in private carparks will be subject to the law.


Q: Is legislation the way to change mindsets and attitudes?
At the rate we’re going, yes, because people are apathetic. I believe in the goodness of people, but I don’t know how it applies. It will be so nice to see people offer their seats on the MRT without saying: “This is a reserved seat, you have to give it up.”

If you’re sitting on the non-reserved seat and you give it up, you make that person’s day and you make your day too because you feel proud of yourself. The rest will think: “Why didn’t I do that?” That’s what we try to promote through our campaign. The tagline is: Remember, their biggest disability is our apathy.

We target the younger ones. This year, my staff proposed to the Ministry of Education (MOE) to include a disability module in its Character and Citizenship Education (CCE) subject, following an announcement that there’ll be an animal welfare module in the revamped CCE.

They initiated discussions with MOE, the National Council of Social Service and other disability VWOs. There’s nothing concrete yet, but the parties are open to the idea. 

It’s all about the mindset that persons with disabilities shouldn’t be pitied; people shouldn’t be apathetic to their needs. Because of our selfishness, our inconsiderate behaviour, they’re affected.


Q: What led to your campaign?
I thought public education was very needed in Singapore. We targeted transportation because the most common feedback was that people don’t give up their seats, lifts are always crowded, parking spaces for persons with disabilities are abused. We wrote to the creative companies. No one wanted to pitch for it.

I was fortunate to know someone from creative agency Goodfellas who did it for us pro bono. We attended the same school, St Joseph’s Institution, and we play soccer together. I emailed him. He said: “Sure, let’s have a look.” We only paid for advertising cost in the cinemas, social media, TV and newspapers. The lovely Eunice Olsen composed an original score for the video. (see video here: https://www.youtube.com/watch?feature=player_embedded&v=8i6T1B_dtDQ)


Q: Do you see a big shift in Singapore to being more inclusive?
The concession is a huge move. It’s a sign that the Government is moving forward in improving the lives of people with disabilities and being inclusive.

The Prime Minister shared our campaign video on his Facebook page. He said: “Let’s do our part!” We’re not asking people to do a lot. Just giving way. Be a bit considerate. Then all these things about concessions will fall into place.


Q: Why do we need to change our labels for disabilities?
Terminology is important because some people are very sensitive to labels. The word “wheelchair-bound” (instead of wheelchair user) means people are bound to the wheelchair, but they can get out and they don’t live in a wheelchair. It may seem trivial to some people but to those in wheelchairs, it may mean a lot.

We’ve a dictionary on terminology. “Spastic” is changed to “cerebal palsy” after 50 years. The word “disabled” is wrong. We’re part of the Disabled People’s International, so I can’t just tell them to change the name overnight. If we follow the Convention on the Rights of Persons with Disabilities, it’s “persons with disabilities”. “Handicap” is a misnomer.

When I was young, people laughed at me because of my condition. Name-calling is very painful for the young especially. We’ve got to use proper terminology to protect everyone so they won’t be embarrassed of their condition or disability. The principle is not to label people or use derogatory terms that make people feel small about themselves.


Q: What’s it like to grow up with Tourette’s Syndrome?
I had it when I was 12. I used to be stared at. People would laugh at or imitate me. People thought I was possessed. I came to terms with it. It was a challenge to study. Sometimes it hinders my ability to read. I take longer to do it. I don’t really care what people think about me anymore. Being a lawyer helps. You grow a skin that’s very thick.

But I worry for those who have the condition, are ostracised and can’t get proper jobs. Someone with Tourette’s told me he had a hard time at national service. He was bullied by his peers and laughed at. No one understands his condition, which was very bad. He was using expletives and shouting. I told him to seek medical help because there is medication that helps.

I’m off medication because I’ve been taking it for years. My wife saw through my condition, so I’m very blessed for that.

I’ve a lot of good friends who tell me they don’t see my condition, they just see me as who I am. I’m very thankful for that and I feel very lucky. I hope for the same thing for people with any condition.


Q: What’s the biggest barrier you face for your condition?
I’ve passed that age when I was afraid. When I was younger, I’d think: “What did I do wrong with my life?” “Why was I like that?” “What can I do to help change?”

I can’t see much of a barrier except perhaps when it comes to speech or reading. I have difficulties when I’m stressed. I can’t focus because there’ll be spasms or tics.

Sometimes it can be embarrassing even though I don’t really care. People do stare. I can hear them make comments. Recently I went to a party. I was introduced to a couple and the lady asked me: “Can I ask you a personal question? You have Tourette’s right?” And we carried on. It’s the kind of thing I appreciate rather than to hear whispers: “Why is he so strange? Is there something wrong with him?” For those who want to know, just ask.

When you stare at someone with a disability, talk behind his back or point, he’ll feel embarrassed, awkward and sorry for himself because he’ll think: “Why am I like that?”

The effect of what people do can be very powerful on someone who’s got a condition or a disability. People have to be sensitive to those with special needs.

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