What is the system at MDAS?
It depends on the nature of the service, which include sports event outside of course. Most of the programmes are held at MDAS centre. Examples of these programmes are talks for caregivers and wheelchair bound and of course life skills training.
We feel that wheelchair bound means having to use since birth or because of an accident…
When we say bound, it means being bounded to the chair, they cannot walk at all. Wheelchair user means that the can walk a few steps or be able to stand, but they need a wheelchair for safety or mobility.
I have to be very clear on whether you all refer to wheelchair bound or wheelchair user because you all are doing this thinkquest website. When people visit your site, they read all about the wheelchair bound, but they might get a shock when they see a wheelchair user getting up from his chair. They might think that the person is imitating the wheelchair bound; therefore I do not want these misconceptions to form.
What do you think of Singapore’s treatment of the wheelchair bound?
I feel that we still need more accessible features. It is necessary to raise awareness, through the media and other \ activities. People have to learn to be more cautious and understanding. They should also be more receptive and not get shocked when seeing a person on wheelchair.
On the government’s part, the Ministry of Education has allocated a school in every school cluster to be wheelchair friendly. However, there is still more room for improvement. Families with a child on wheelchair will also have to make far sighted decisions when choosing the school. They have to consider if the school is near their homes, or if transport is convenient to fetch their child to the school.
People diagnosed with muscular dystrophy do not necessarily mean that they are wheelchair bound. A child may be diagnosed with muscular dystrophy when young, but he could still be able to walk. As the condition worsens, they will start to rely on manual wheelchairs.
Transport is another major issue. A wheelchair user can transport himself onto a car. But people with muscular dystrophy have weak muscles. They cannot transfer themselves onto car. So the entire wheelchair has to be loaded onto the vehicle with the person in it. The bus stops are also not fully accessible yet so not all wheelchair users can take bus.
For taxi, only the London taxi can accommodate the wheelchair. The taxi costs 25 bucks a trip. Imagine the amount spent going and returning from school for 5 days a week.
How about non-government organizations? Can you rate their performance?
They are only very few associations that serve the wheelchair bound community. There is a high demand for help. Therefore there are not enough vehicles to go around for everyone.
How do they prioritize who to help?
People with low income that cannot provide basic needs will definitely need more help. For others, we do try to provide transportation funding. You must understand that the wheelchair bound compromises on their lifestyles.
How do the wheelchair-bound feel about their condition?
I will look at it from two different perspectives. Firstly, it is from the view of the people who are born with the illness. The second perspective is from the person who develops it at a later stage.
Those who were born with it have more family support. They feel loved; the parents will love him more than the other sibling. They will feel secured. They have more attention but they will feel very sheltered. When they enter society, most of them are not ready. Maybe they would feel that the others in society don’t love him. Another reason why they are not ready is because parents lower their standards. The parents do not expect them to bring home the bacon.
The second group is those who were able throughout their lives and became disabled suddenly. This group of people will have a lot of challenges to face. They will have a sense of withdrawal. They blame people. They feel useless. They isolate themselves. They lose their friends. They become lonely. They form negative thoughts.
When the person cannot relate with his friends’ stuff, he will slowly withdraw. It is best if he can meet someone who gives him the emotional support. But if he does not, and shut himself without the will to pull himself together, he will feel useless and starts wasting his life away. It would also become hard to invite him out for social gatherings.
However, if they are positive and can move on, they can be an inspirational figure for the rest. Therefore the outlook of life depends on individual values and perspective.
How does counselling help?
To date, we must still accept the truth that there is no cure. It is because some parents will have hope of finding a cure and will go out to source for one. Other parents blame themselves, blame God or other people. Counselling gives people a chance to talk about it. We must change the perspective of people who think that if they come to MDAS, it means telling them that it is fate that his child has no cure and that has to associate with an organization like this. Existing members are also important as some parents might consider joining when they see other members being happy to be with the organization.
When the children overhear about their illness, or when they feel weak and feeble, they would know that something is wrong with them after regular visits to the doctor, etc. Some of the children who were brought here for the first time even express that they want to sit on the wheelchair when they feel that they need it. That is because they want to identify with the other children on wheelchairs and be able to navigate freely.
Do people lose their jobs after being disabled?
Sometimes it depends on the person’s personality and character. If he feels that he is embarrassed to meet people, he will give up on himself. With advanced technology, people who have the intellect can still achieve a lot of things. In this case, it is the person’s willpower that will help him overcome obstacles in life.
Many things can be done. Flexible working hours, working from home, or having the company make some basic furniture changes are all ways in which a person on wheelchair can adopt to accommodate his condition.
Are the wheelchair-bound acceptable to employers?
Some of them are not ready because they grumble about the pay being too low. However, I feel that sometimes, it is not the salary that matters, but occupying oneself and grabbing the opportunity to learn.
The employers should also not give job out of sympathy but out of opportunity. They should not discriminate against the disabled by not interviewing him. Give them the chance.
How do you think Goods and Services Tax (GST) will affect the WCB?
The disabled have no choice. Unlike the able bodied people who can choose between the bus and taxi, the disabled must settle for taxi or nothing at all. So each time MDAS call the members for a social outing, they are reluctant as transport fees are high. They do not want to burden family for money. Medical bills will also be more expensive due to the increase in tax. A two percent increase in tax for a $6000 motorised wheelchair for the MDAS member amounts to $120 extra. So yes, the burden on the wheelchair bound would definitely increase.
For a middle class family, with 6 in a family including a maid, they have no choice but to hire one to take care of the kids. The husband and wife would both work. The house they stay in is a presentable four room flat, and the family may have a car. But the net income after deducting all the expenses is little.
There are more burdens on the parents especially when they have their own parents to take care of. Government encourages Singaporeans to take care of three generations.
Agencies give aid, but the people with Muscular Dystrophy have high expenses. A manual wheelchair can cost more than a thousand dollars. For patients with more severe muscular dystrophy, they may need a power wheelchair, which can easily cost $4000. Some of the patients may need special needs, like special backing on their wheelchair. The extra feature can cost $3000 to $4000. A special posture to suit the person’s body shape is necessary so as to prevent further deterioration.
Breathing machine may also be needed, and it will cost another $6000-$7000. Needs like these are instantaneous and therefore there is no time for the family to save. Situations like this pose short term financial difficulties for the patient’s family.
Subsidy can be given even to mid-income families, depending on their financial conditions.
The Singapore Government does not give out money to everybody. The money is given to those who are really poor, but not necessarily the disabled.
Just last year alone, MDAS helped 11 people with machine purchases. One person requires about $6000 so it is not easy to fund everyone. Therefore help is provided on a case by case at MDAS.
What about Medisave?
Medisave cannot be used for equipment. But I wished that it could be used for equipments. Governments in other countries subsidize the cost of the equipment for the disabled.
More improved wheelchairs are coming up because patients are funded by the government. The market grows and thus more development in that area. People from other countries are more fortunate in this aspect. In Singapore, wheelchairs are expensive because they are imported.
The public transport providers have started improving accessibility of their stations. What comments do you have about this situation?
The wheelchair accessible facilities at MRT stations are sufficient. But the environment around MRT stations can be improved. Seamless movement is not achieved yet. The wheelchair user cannot take feeder bus to commute short distances. They have to push their wheelchair all the way there. There are also obstacles in the way, making them have to detour and travel longer distances.
How friendly is the Singapore public?
Between 6 and 7 on a scale from 1 to 10.
Singaporeans are all kind. There were days a long time ago where people would stare when I go out.
“It is okay to look, but staring hurts.” GOOD QUOTE.
It is hard to encourage disabled people to come out as Singaporeans stare and might give unkind remarks. It hurts the person and discourages him from coming out.
Perception of the people varies. Singaporeans are much more kind now. They are more receptive in seeing people in wheelchair, maybe because more elderly are on wheelchair now.
People would still question as they are curious, especially when a child is on wheelchair. They would ask the mother what happened, why is happens, etc and that annoys the parent or person on wheelchair.
Other people like to act as doctors. They claim to know of another person who is very good at massage, whose therapy can cure disability. People have good intentions but they put it in tactless way.
Some people can be very kind when they have the time. There are people who tend to misuse the handicap toilets. Some use it to smoke. The wheelchair bound person may be medically having problems. Infection of lungs may occur due to polluted air. Therefore I can conclude that some people can be nice but they do not want to compromise their own convenience.
Most WCB will ask for help if they need help. Therefore, the public should be more open minded and more sensitive to the environment. If the person on wheelchair dares to come out, they are already confident.
So how do we know if the wheelchair user needs help?
You must observe if the person struggle and ask if the person needs help. I once encountered this person who pushed me up the slope when I was trying to reverse down the slope. This is an example of a misunderstanding due to the lack of understanding. It is ideal to have a 1:12 gradient for ramps but there are still some that are very steep.
SBS transit is taking 17 years to ensure all buses all wheelchairs accessible. How do you feel about this?
17 years is quite long but they are pushing it. However it is good to see that there are things being done. Hopefully more wheelchair users will use the bus services so that the public would be convinced that it is feasible. The public reaction might be negative as upgrading buses would millions of dollars and the extra cost might be passed off to the commuters through increased fares. Singaporeans are kind but they don’t want to compromise on their benefits too.
So what are the regulations with public buildings?
Builders comply with the regulations. But when the building is passed over to the management, in pursuit for development of the shopping centre, they compromise on the friendliness of the facilities. There are potted plants are placed in front of lift buttons and the handicap toilets are used for storage. When we question the management, they would say that they is no demand for the toilets. In other places, there is no room for cleaner, so cleaner would use the WC toilet as storage room.
Does the MDAS promote sports?
The wheelchair bound has to look out for accessibility. A lot of preplan is needed. Things cannot be done spontaneously. The place to go to, the kind of transport, cost incurred, taxi booking, and transport mode, it all has to be thought through before going out. More has to be understood about the place. Where the steps are, where the toilets are, how many toilets are there, where the ramps are, etc. Duration of outing has to be known because of toilet issues. Some might prefer to use the toilet at home. Are the toilets accessible, which floor, which corner? Some may have only one WC toilet on each level and it is not smart to move around looking for a toilet.