Go a mile in our wheelchairs: A message from the disabled community

Jeyaraj Santraju was once a mechanical engineer in Singapore, but a workplace accident in 2006 changed his life forever.

He was working to assemble a high-stand machine that day when part of it weighing an estimated eight tonnes fell and landed across his back.

His colleagues who rushed to help him managed to lift the part that had him pinned down and pulled him some 20m away from the machine as they feared that the rest of it would collapse as well.

Unfortunately, their well-intentioned act left permanent damage to his spine – as they were pulling him away, his backbone fractured and became dislocated, damaging the inside of his spinal cord and causing partial paralysis.

Jeyaraj recovered but was left without sensation in his lower body. He also suffers from bladder problems which require him to wear a diaper at all times.

He came back to Malaysia that year and was reunited with his wife and son in Rawang.

It took him a while, but he eventually accepted his new life in a wheelchair. It was then that he began thinking about the rights of disabled people.

He also became acquainted with Francis Siva, the president of the Independent Living and Training Centre Malaysia (ILTC).

Every now and then, he visits the centre to volunteer. He has also learnt how to be independent despite his disability and earns a living selling pens as well as a book on how to manage life from a wheelchair which he wrote based on his own experience.

After 16 long years of living as a disabled person, he has come to realise the systematic disparities with which others like him struggle.

“At ILTC, we want to make sure that no disabled person is left behind,” he said in an interview with MalaysiaNow.

“If they are entitled to receive funds or aid, we will make sure they get it from the government.”

Today, in conjunction with International Day of Disabled Persons, his request is that the authorities fulfil the promises which they have made on paper.

“We don’t want it to be beautiful only on paper,” he said. “We want real action.”

Some problems

One issue with which disabled people often struggle is the application for the People with Disabilities Workers’ Allowance or Epoku. This needs to be submitted three months in advance of the deadline, failing which the yearly allowance of RM450 will not be given.

Another problem is the minimum pay for people with disabilities, which at RM1,100 is not often not enough for them to cover their expenses.

And if a disabled person is paid more than RM1,500 a month, he or she will no longer be eligible for Epoku. This, to Jeyaraj, is unfair.

“I want to work and get paid well,” he said. “I also have a family to feed. Don’t treat us like children.”

Siva, the president of ILTC, said the problem was a lack of understanding on the part of the government about the issues faced by people with disabilities.

“We have asked the women, family and community development minister for a meeting to discuss the issues on the ground, but after eight months, we haven’t received a reply,” he said.

“In parliament, the deputy minister said that disabled workers don’t face any problems during the pandemic. All I can say is, something is wrong here. They obviously don’t understand the problems we face.”

At 29, K Ilavarasi is well acquainted with these problems.

As a child, Ilavarasi was diagnosed with a condition which sees her suffer from an excessive amount of white blood cells. During this period, it was always her father who took her to her doctor’s appointments and picked up her medication.

In 2006, though, her father met with an accident and no one else in her family knew how to take care of her – not even her mother.

With her father out of action, she went without medication for a long time. Her condition deteriorated and she eventually wound up in a wheelchair.

Her mother left her family later that year, and her aunt came to stay with them.

Now, living with the woman she calls “mother” instead, Ilavarasi has also learnt how to be independent and to take care of herself.

Something better

Siva, who knows the family, says Ilavarasi is among those who lack enough support from the authorities.

“When I first met her to give some food donations, I saw that she was using an old wheelchair that was worn and torn. I had to help her so I gave her a new wheelchair with a cushion that is way more comfortable,” he said.

He voiced disappointment that no one from the ministry had come to see them and to learn about the issues on the ground.

“If they don’t come to see and talk with us, they won’t know the problems that we are having. So how can they give a better life for these people?”

He also said that a single system will not work for everyone, and that one-off donations will do little to help disabled people live a better life.

This rings true for Jeyaraj as well – all he wants is a proper job with a good pay, and for the government agencies responsible to sort through the data on people with disabilities and help channel aid to those in need.

Ilavarasi meanwhile dreams of a sewing machine so that she can work and become more independent.

“My wish today is for something better,” Siva said. “We want participation and inclusion in the national decision-making process.

“Right now, we have only a few people with disabilities included in discussions. That is not enough if we want to provide the community with a quality life.”

Jeyaraj agreed that able-bodied people would find it difficult to understand the problems faced by the disabled community.

“That is why we need disabled people to be there,” he said. “Try to fit in our wheelchairs – then you will understand.”