I, Caregiver: View from a wheelchair

By Putri Juneita Johari

AS I sat in a wheelchair, writing this column for the last two Sundays, I suddenly remembered Firdaus. I met the 10-year-old boy who was wheelchair-bound, many years ago.

He was paralysed from neck down and had minimal use of his right hand and fingers. He went to a centre for disabled children, together with my son, Omar.

Firdaus was different from many others because he was only physically disabled. His mind was sharp, as was his wit. He was a very bright boy.

He used to ask a lot of tough questions too, many of which I couldn’t answer. One of them was, “Aunty, is there a place in this world where I can do a body transplant? I’ve heard of heart and kidney transplants. I am sick and tired of this useless body. I can’t do anything with it. Please, Aunty, when you hear of a place where I can have this done, will you help me?”

We spent quite a bit of time together that year and Firdaus opened my eyes to a lot of things, allowing me to see the world from his perspective as a quadriplegic in a wheelchair. He challenged me to put myself in a wheelchair too, tie both my legs with weights so they cannot move, but he allowed me to use my hands. Firdaus wanted me to know what it was like to be disabled.

I took the challenge for three days, but only a few hours each time. I hated it. We went out in public together with the help of other people for this experiment.

The first thing I had to deal with were the looks — some curious, some kindly but many avoided eye contact. Children stared and asked questions. We talked to them about disabled people. It was the adults who needed more help and exposure.

Firdaus told me often how he hated it when people refused to make eye contact or ignored him but were asking his able-bodied companion questions about him.

During this experiment, I realised that we often forget about the comfort of those in wheelchairs.

To begin with, when we talk to someone in a wheelchair, make eye contact. Be at eye level. This will reduce strain on the neck for the wheelchair-bound. If you want to know what it feels like, sit in a chair, look up and talk to the ceiling directly above you for a few minutes. It hurts!

We also often forget why a person is in a wheelchair. He could be suffering from spinal injury or other illnesses that, over the years, caused his limbs to look different from ours.His legs may be skinnier or he may have a pot-belly.

Just because he looks different does not mean that you will catch whatever he has just by looking or talking to him or shaking his hands. Try not to stare. Most people don’t like their pimple, for example, stared at, let alone a part of their body that is different from others.

When interacting with someone on a wheelchair, never slap them on the back or thigh even as a friendly gesture. This can cause them to lose balance or trigger muscle spasms which can be painful. Muscle spasms are uncontrollable movements in the body due to a damaged spinal cord. The person may even fall out of the wheelchair because of loss of balance.

To the wheelchair user, the wheelchair is an extension of his body. It is part of his personal space and should be treated with respect. So don’t rest your foot on the wheelchair.

Always ask first before offering to push the wheelchair. Never move it without consent.

You don’t have to take my word for it. Take the challenge.

Single mother May Tan Sook Booi, 51, is bound to a wheelchair since she was young due to polio. Despite her condition, she is doing well as a tailor with skills in making Malay, Chinese and Indian traditional wear.

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I, Caregiver: View from a wheelchair

AS I sat in a wheelchair, writing this column for the last two Sundays, I suddenly remembered Firdaus. I met the 10-year-old boy who was wheelchair-bound, many years ago.

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