Educating Janna – Breaking Barriers – The Borneo Post – 1 November, 2015

Educating Janna
November 1, 2015, Sunday Peter Tan,

“WHY should I pay for my child’s education while others get it free? I also pay tax what!” Rafidah Rafizah Ahmad said in exasperation.

We were chatting about the Budget 2016 announced by the Prime Minister recently, the rising cost of living, and the state of education for disabled people in the country. Her 10-year-old daughter, Izdihar Janna, has cerebral palsy. It is a condition of the brain that affects movement, coordination, posture and learning.

“Her education fees alone costs RM2,000 per month in total,” she continued. “Tuition costs another RM100.”

According to Rafidah, some mainstream classes in public schools do accept those who are physically disabled. However, this is at the discretion of the school management and normally only those with mobility impairments are accepted, especially those with good hand function and no speech problem.

With such few options left, parents have to move from one place to another to look for a mainstream school that is willing to accept their child. Even then, if they manage to find one, there are no teaching assistants to support the student who may require additional help in their learning and tasks.

The Malaysia Education Blueprint 2013 to 2025 has provisions to cater to students with specific needs such as those with physical and learning disabilities. These include the support by a network of counsellors, therapists and teaching assistants. However, these have yet to be translated into practice.

“Schools here don’t have integrated therapies. I either have to take her to the hospital or private therapists. She will have to skip classes on those days as a result,” Rafidah added as she mused over the quality of education in Malaysia for children like Janna.

She had approached some schools where she requested the teachers to help recommend Janna into a mainstream class or at the very least partially inclusive class but was left disappointed each time.

When Janna was 7 years old, she joined the Special Education Integration Programme (PPKI). The teachers left her alone doing nothing during writing lessons and outdoor activities because they were not trained in handling children with cerebral palsy specifically and on the usage of assistive devices. Janna felt isolated and cried each time she had to go to school.

With her daughter’s wellbeing affected like that, Rafidah decided to transfer her to another school further away but runs the same programme. By the end of Standard 2, one of the better teachers was transferred out only to be replaced by one that did not show much commitment to the welfare of his charges. The students were mostly left idling in the class.

As a last resort, she decided to enrol Janna into a private school near to where they lived. Although the fees are expensive, there are occupational therapists and physiotherapists in addition to teachers for academic subjects where Janna is given one-to-one attention. She got to learn new skills like music and recite the Koran, among others.

In between attending private school, Janna also joins a centre that provides Conductive Education, known as CE in short. This is a system that utilises a wholesome programme of learning and playing that involves physical, intellectual and social activities.

“Janna loves it because it is fun,” Rafidah shared. “Both private school and CE curriculums complement each other and make the brain work better.”

“The only problem is that CE clashes with her classes in school. Janna’s classes are in the afternoon because she has many other activities in the morning like therapy appointments, horse riding and boccia.”

With a tight schedule like that for such a young girl, I asked Rafidah if she is overloading her daughter.

“She enjoys them,” she said. “There are days for her to relax too. I have already consulted a clinical psychologist about her schedule. We were accessed whether Janna is under- or over-stimulated. So far, it is still manageable.”

Giving a disabled child a good education and a better quality of life needs commitment, especially patience, time and money. Rafidah left her promising career as an engineer to devote her time on Janna’s education, co-curricular activities and treatments.

The RM700 that she spends monthly on petrol and another RM200 on toll are an indication of the distance she has to travel. Hydrotherapy sessions cost another few hundred. That doesn’t include rehabilitation equipment and other incidental expenses yet. When added together, all that amount to a princely sum.

On why she is doing all these, Rafidah has this to say: “I want her to be able to live life to the fullest. I want her to know the basic activities of daily living to survive in the real world like reading, mathematics and money management.”

“If she wants to be a teacher like she aspires to be, she needs to have all these skills. These are things she can’t even learn from public schools. Therefore, I have to send her to places where she can learn, even if I have to pay for it.”

She feels that the government can do better in the provision of support system for disabled students. Apart from making public education inclusive as stated in the education blueprint, accessible school bus service should be available to make it convenient for parents who are working. Therapies should also be included in the curriculum so that students don’t have to miss classes every other day.

To sum it up, every child has a right to get an education. The onus is on the government to ensure this is realised. At the moment, parents who can afford it resort to sending their disabled children to expensive private schools because public schools are unable to provide the necessary support. The lack of trained teachers, teacher’s aides and the infrastructure are among the issues that need to be addressed.

The government should not be talking about setting an employment quota of 1 per cent for disabled people in the civil service when we cannot even provide the basic foundation for disabled children to get a decent education. What kind of jobs can one get in the public sector without relevant academic qualifications?

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Toilet tales – Breaking Barriers – The Borneo Post – 25 October, 2015

Toilet tales
October 25, 2015, Sunday Peter Tan,

THE first time I attended an international conference on disability, I was awed by the sheer number of disabled people gathered in a single place. Altogether, there were 3,500 participants from around the globe. It was the Disabled Peoples’ International World Assembly in Incheon, South Korea. I was invited to present a paper on Independent Living in Malaysia.

The moment I arrived at the venue, the Korea International Exhibition & Convention Center (Kintex), I spotted two rows of accessible parking spaces. There were at least 30 lots located near the main entrance of the building. This was a disabled driver’s paradise. I had started driving then and looking for a parking space back home was always a hassle. It was either misused by non-disabled people or none were provided.

The sprawling complex had several accessible toilets but it was obviously insufficient for this large number of people. I was most impressed that the organisers were mindful to ensure the comfort of participants by setting up 10 accessible portable toilets outside the building. That was the one time I never had to worry about not finding a toilet. They were clean, spacious and well-maintained.

Incidentally, I was invited to speak on Independent Living in Malaysia again at the Asean Disability Forum Conference held at a hotel in Kuala Lumpur earlier this week.

The participants were from member countries of the regional grouping. The floor where the ballroom and function rooms were located had only one accessible toilet. I had to wait for 30 minutes for my turn to use it.

I have no bladder control. When it is filled up, it will leak, which was exactly what happened that day. I had drank a little too much while making the presentation because my mouth was dry. This is caused by the medicine I take to treat my overactive bladder. The medicine is a two-edged sword. While it is supposed to reduce the frequency I need to urinate, it also makes me drink more to overcome the dryness in my mouth.

Fortunately, I was wearing adult diapers. I usually put one on when I am out and for moments like that when I am unable to get to a toilet in time. Ideally, my bladder should be totally drained every three hours with a catheter to prevent urine from flowing back to my already diseased kidneys and causing further damage. That is the reason I make sure I know where the toilets are in places that I go to.

I spend about 20 minutes emptying my bladder each time. With the amount of time I need, which is also the average duration required by my disabled friends, one toilet can only accommodate three users per hour. Using a public toilet for this length of time is not an issue normally but when there is a large concentration of people who need to use the same facility, it could turn into a messy situation.

Many accessible toilets in Malaysia are poorly designed, even those in luxury hotels and upmarket shopping malls. The most common mistakes are doors that open inwards, fixtures that cannot be operated by less functional hands, toilet bowls that are too low and mirrors that are too high. Other times, they are used as storerooms for cleaning utensils and chemicals.

I once asked a cleaner at a shopping mall why she kept mops, pails and detergents in the accessible toilet. She said that there was no other place for her to keep those items and promptly pushed them aside to let me in. Even then, I had difficulty using the sink. Bottles of detergents under it prevented me from getting close to wash my hands.

The most ridiculous installation in a toilet I ever came across was at a hypermarket in Penang. The flip up grab bar is useful for transferring from wheelchair to toilet and vice versa. It is installed on the wall parallel to the toilet bowl. In the case of the hypermarket, the bar was secured to the floor.

The sight was as frustrating as it was flabbergasting. Who in his right mind would do something like that? It has no function and is an eyesore to boot. The grab bar on the left should also be attached with the vertical bar placed at the front instead of at the back. Its purpose is for users to pull themselves up with it. I found out later that complaints to the management were disregarded and nothing was done to rectify the mistakes.

Toilet facilities are integral in a modern civilised society for privacy, hygiene and health purposes. It is even more crucial for disabled people with health issues. Designing and constructing one that is accessible is not difficult. All it takes is the understanding of why specific fixtures are needed and how they are used.

I hope that one day in the near future, the standard of accessible public toilets in Malaysia can be on par with those in Japan and Korea in terms of practicality in design, maintenance and cleanliness. Disabled people should not have to worry if the toilets at places we go to are usable. It would certainly make our time out more enjoyable.

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Lessons from heartbreaks – Breaking Barriers – The Borneo Post – 18 October, 2015

Lessons from heartbreaks
October 18, 2015, Sunday Peter Tan,

DISABILITY is hard on relationships. No matter how much optimism there was in the beginning, sooner or later it would wear thin. Promises to love each other till the end of time become meaningless. When one side loses hope of a bright future together, a breakup is only a matter of time.

Tribulations like this are no stranger to me. While spinal cord injury broke me physically, the women I gave my heart to broke me emotionally. Between the two, emotional pain was more difficult to bear. It gnawed at the very core of my being and left me drained of the will to do anything, even to live.

I had just gone steady with a girl for a couple of months when I became severely paralysed. After I was discharged from the hospital, we spent most of our time together at home. Those were our dates. My immobility made going out difficult, if not impossible at that time. We carried on like that for three years despite her parents’ objections.

She was a young woman. Her life was just beginning. It must have been tough on her to have a boyfriend who could not take her out for a movie or a stroll at the beach. I was neither in a position to offer financial nor emotional security to her. The future with me looked bleak.

Cracks in the relationship began to appear when it became apparent I would never recover. The signs were obvious. We quarrelled often. Unpleasant words were exchanged. Conversations over the telephone always ended up with the handset being slammed down. I clung on tightly even then.

“If she left,” I reasoned, “no other woman would want me any more.”

The spats culminated to the day she told me straight to the face, “You’re a toad dreaming of eating swan meat.” This is a Chinese euphemism for an ugly man wishing to marry a pretty girl.

“I don’t want to regret in the future,” she added, and walked out.

There was nothing I could do to save the relationship. She was resolute. The breakup hit me hard. It is true that the first cut is the deepest. I fell into depression and became withdrawn. The insides of my chest hurt each time I breathed. I felt empty and despondent. Hopelessness overwhelmed me.

I ate little and barely slept. My complexion turned sallow. I became thinner and thinner by the day. My parents did everything they could to cheer me up but I was determined to wallow in self-pity. They were so worried for me to the extent they got our family doctor to come check on me.

“If you continue starving yourself, I’ll have to admit you into the ward and put you on drip,” Dr Shanti warned. I gave her a dry smile and nodded when she made me agree to start eating again. I may not have had the appetite to eat but the thought of having to stay in the hospital was even more unpalatable.

Jenny, my physiotherapist, also dropped by to find out why I had missed several sessions with her. The look on my face and the monosyllabic responses told her as much.

“Nobody is worth dying for,” she told me.

Those words resonated in my mind. It made sense. No one is so important for me to give up my life for. She went on to make me realise I was not only hurting myself but the people around me as well. It was only then I saw how immature I was when it came to matters of the heart. As I recovered from that episode, I was mentally prepared for a life of singlehood believing that no other woman would find my condition desirable.

Hope springs eternal nonetheless. I told myself that if ever I got involved again, it would be because of love and not because I was desperate for a companion, and that she must be able to accept me – impairments, warts and all.

As fate would have it, I went into a relationship again shortly after that. We were good friends and had dated on and off before my accident. She came into it with full realisation of my limitations and what she was getting herself into.

Like other couples, we had our ups and downs too. Half of the 12 years we were together were spent apart because she was working overseas. I gave it my all anyway. Ultimately, the distance, lengthy periods of separation and temptations of the foreign land tore us apart.

Naturally, I was sad, having invested so much time and heart into it but I knew better than to allow depression to take over like the last time. In a way, I was also glad we finally got it over with. The feelings had long been gone. I know she tried to make it work but being with a disabled person, especially one with severe impairments, takes more than love and courage. It requires perseverance and great physical effort to support me in performing my daily activities. These are traits not many people can keep at in the long run.

Heartbreaks may be painful but they are not the end of the world. I survived twice. What didn’t kill me made me stronger. I never fully recovered from them but with each occurrence I learnt to love better and deeper. I also learnt there are people out there who are able to look beyond physical attributes and love the person for who he is inside regardless.

To be in love is a beautiful experience irrespective of the outcome. Lord Alfred Tennyson said it succinctly when he wrote, “Tis better to have loved and lost than never to have loved at all.” I am glad I didn’t let the painful experiences dissuade me because my true love and I found each other in the end.

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