Thursday August 11, 2011

A death that could have been prevented

The Star

WHEEL POWER
By ANTHONY THANASAYAN

THERE was sadness in the disability community last week when news broke out of the death of a disabled girl in Rawang, Selangor. She was only 14. She had pressure sores which may have led to septic shock and eventual death.

Pressure or bed sores can occur when a disabled person is sleeping on the bed or sitting in one position for a prolonged period of time. Constant pressure on one spot reduces blood supply to the area. Over time, it can cause the skin to break down and form an ulcer which can take a long time to heal. If left untreated or not properly cared for, bed sores can develop into a nasty infection which can prove fatal.

There was mixed reaction to the news of the teenager’s death. Some of it was rather disturbing.

Some able-bodied people actually told me that it was better for the girl to have died than to live her life out as a disabled person. This kind of thinking is not only discriminatory but shows a complete ignorance of disability.

I recall an incident not long ago when the Supreme Court in the United States made the decision to finally pull the plug on a woman who was brain-dead. They removed the artificial tubes that were keeping her alive.

It was a very dark day for the international disabled community and activists.

Countless disabled people with profound handicaps, who depended on medical equipment for their survival, came forward to support the handicapped woman.

Their press statement was entitled, “We love our tubes” which said it all about being disabled and leading a high quality of life.

The campaign was led by a group of activists who depended on feeding tubes and breathing apparatus for survival. They aptly called themselves, “Not Dead Yet.”

The teenager who died last week was born disabled. She needed to be carried from her bed to her wheelchair and the bathroom. Although she was able to push herself in her wheelchair, she could only do it very slowly.

Her father was in prison. Her mum was a sweeper. They lived in a very simple house and had no transport.

The girl had no friends. She was also illiterate.

Although she is gone now, she leaves behind many disturbing questions that remain unanswered.

Some of the pertinent ones are:

> Why was she never hospitalised for her condition? Neighbours said her mother went to several clinics for help, but was she ever referred to a specialist in a government hospital? Why does her case not qualify for nurses to visit her in her home to care for her wounds? With no transport of her own and no financial resources, where can Malaysians with disabilities like her turn to for help? It is for this and other reasons that disabled leaders are asking that all disabled Malaysians be given a monthly allowance of RM500 for a start to help raise their quality of life.

> It is not clear if she was registered with the Welfare Department. What kind of follow-up does the department have for needy cases like hers? Were home visits made on a regular basis to monitor her progress or was it a one-off visit only, if at all?

Many of us are familiar with advances made by our society to help raise disabled sportsmen, and make more buildings and roads disabled-friendly.

However, what good are these if the basic needs of Malaysians with disabilities are largely ignored.

The teenager’s death may have been prevented if she was given the help that she so desperately needed.