Muse
Wonder Woman
Evanna Ramly 
Aizan hopes to see a more inclusive society one day
When she was 14, Dr Aizan Sofia Amin of Universiti Kebangsaan Malaysia’s School of Psychology and Human Development was diagnosed with osteosarcoma, or cancer of the bone. “I experienced swelling above my right knee and my parents took me to hospital,” she recalls. “X-rays showed abnormalities on the bone, which was by then jagged in appearance.”

Her doctor performed a biopsy to diagnose cancer but the results came back negative. Nevertheless, she underwent surgery in order to remove the tumours and reconstruct the bone by grafting tissues from her pelvis. Laboratory tests later confirmed the removed tumours were cancerous and she was told her leg would have to be amputated.

“My parents refused to accept the fact that the tests before and after surgery provided differing results,” she relates. “They decided not to follow the doctor’s advice to amputate my leg and instead tried all sorts of traditional treatments. At the same time, we still continued hospital treatment but only for postoperative care.”

After about a year, she was able to attend school again and even cycled to classes. The doctors were surprised and it was believed that she had been misdiagnosed. Shortly after that, she fell and broke her leg. In order to avoid amputation, the family continued trying various traditional treatments all over the country. By then, she had missed much of school as well as her PMR examinations.

“The swelling was so bad, my leg was the size of a coconut and secreted pus. It was definitely cancer. When my condition got worse and my weight dropped dramatically, we went back to the hospital. The doctors estimated that the cancer would have spread to my entire body as it had been left untreated for a year.”

They also did not give her parents much hope that she would live but her mother chose not to inform her of this. “I remember she just kept telling me that I would survive. I told them I wanted my leg amputated immediately as the pain was getting unbearable. Of course, it didn’t happen immediately as there were a lot of hospital procedures to get through first.”

However, three days later, the doctors were forced to operate as one of her veins snapped and bled. They stitched it back – without anaesthesia. “I was given months to live although the doctors also said I could even die the next day. In the end, they took pity on me and decided to amputate my leg, not to save my life but to provide comfort for the remainder of my life.” She was 16 then.

Since they had not expected her to live, they did not scan her leg after the surgery. “After a month in the ward, my condition improved. I was able to eat and I was cheerful. A CT scan showed that the cancer had not spread and plans were made for daily chemotherapy.”

After six cycles of chemotherapy that were so horrible she wanted to give up, she spent most of her time at home. “There was no pressure to return to school. It was only when one of my doctors asked why I no longer attended school that I decided to resume studying.”

She had a lot to catch up on in her final year. “Thankfully I managed to score 5As, completed matriculation, and ultimately earned my Bachelor’s degree, Masters and Doctorate in Psychology, Counselling and Disability Studies. I focused on these fields because I actually went through depression due to my condition and wish to help others in the same boat.”

Recently, Aizan, 34, was named one of the 13 ambassadors of the 2050 National Transformation (TN50) initiative. “I was quite surprised as it was completely unexpected,” she laughs. “After doing more research, I decided to accept the offer as I felt compelled to raise awareness of disability issues.”

The brainchild of Prime Minister Datuk Seri Najib Razak, TN50 aims to engage the public in mapping out the nation’s journey into the next 30 years after 2020. Aizan hopes to deliver her message through motivational programmes in schools and universities.

Since March this year, she has been invited to programmes, dialogues and discussions with disabled persons, most notably with NGOs in aid of the blind and those with rare diseases. “Now I’m in the midst of planning a dialogue between persons with disabilities from seven categories. We hope to gather collective aspirations from disabled persons in the Klang Valley and ultimately beyond.”

Aizan says Malaysians have to see that the disabled are just like everyone else. “Our society has a very negative perception towards the disabled because we have not been exposed to them in a positive way. For instance, they are always viewed as beggars. This kind of stigma and prejudice leads to discrimination against them.”

In terms of education, her research has shown that support from schools is seriously lacking. “Those with physical impairments have to be carried by their parents to classes on the top floor. Why can’t they relocate the classes to make it easier for these students?” she asks. “Their families have to sacrifice a lot for their education. Once they are in secondary school, they are too big to be carried and many of them simply quit school at this point.”

“Without the necessary academic qualification, it is difficult for them to go far in life as they cannot secure good jobs. Even with education, many employers are still reluctant to hire disabled workers, especially those with visual impairment. How are the disabled to lead normal lives without a steady income?”

Transportation is another major issue. “Many places such as train stations are not accessible to disabled persons and even getting to the stations is challenging,” she laments. “Very few taxi drivers will take passengers with wheelchairs as they find it a hassle to help transfer them and the wheelchairs into the vehicle. They think of these people as a burden, to the extent that a friend of mine once had to get someone else to hail the taxi for him. Even then some drivers refused upon seeing the wheelchair.”

Besides that, many abuse the facilities meant for the disabled such as designated parking spaces and toilets. Some cleaners even use the toilets as store rooms. “It’s not that we’re being stingy or precious but the public must understand that disabled persons have special needs,” she explains. “For instance, they might not be able to hold in their urine due to certain medical conditions and need to be able to use the facilities as soon as possible.”

Then there are problems of a more personal nature. Some families refuse to allow their children to marry disabled persons, especially disabled women. In an Asian society that emphasises filial piety, this attitude presents an even greater challenge. Furthermore, the patriarchal viewpoint that sees women as child-bearers and domestic managers translates into a preference for the non-disabled. In the end, the couples will either split up or elope.

In addition, there was in the past a significant lack of exposure to disabled role models. “Back then, this was mainly due to poor accessibility,” she notes. “Because many disabled persons were unable to leave the house let alone travel far, society did not see much of them and thus never realised that they are in fact just like everyone else.”

These days, more disabled persons are claiming their rightful place in society and Aizan hopes that people will change their viewpoint. “Educating our society is the hard part and sometimes we have to struggle to secure our rights. That said, it is getting better although there is still much that needs to change. Everyone has to play their role.”

The media has the power to alter this mindset. “TV shows and films almost always portray the disabled negatively or tragically, rarely as the hero or even as an ordinary person,” she observes. “You hardly see disabled actors as well. It’s like we’re not really there.”

The root of the problem, she believes, is that we are not an inclusive society. “Otherwise we would embrace the differences among us. Instead, Malaysians treat their disabled like third-class citizens.”

Thankfully, more people have opened their eyes and awareness of the issue is on the rise. “It is our responsibility to empower these individuals so that they can become leaders and examples to other disabled persons. Read up on these issues and join NGOs to gain more knowledge. Everyone has to work together and lend the right support to fight discrimination.”

This article first appeared in Focus Malaysia Issue 248.