Thursday, July 17, 2003

Struggle to be free

By ANTHONY THANASAYAN

I WAS heading home on July 8 with one of my service canines after a visit to

our friendly vet when I first heard the news over the radio.

Singapore Radio interrupted its broadcast just before 7pm to bring in a live

press conference from the medical team at the local Raffles Hospital.

The doctors who had tried to surgically separate the 29-year-old conjoined

Iranian twins, Ladan and Laleh Bijani, who were fused together from birth in

one skull but with separate functioning brains, solemnly and sorrowfully

announced their failure in their mission - and that the girls had died in

the Lion City as a result.

Like most Malaysians, I was devastated by the news.

Conjoined Iranian twins, Ladan and Laleh Bijani, 29.

I recall needing to drive myself around the block several times before I

could finally come to terms and comprehend the depths of what had happened.

Although we all knew that the never-before-attempted-surgery had only a

50-50 chance of working out, like most of my friends, we were somehow only

expecting and praying for nothing but the best to happen for the Bijanis.

The woeful news of the women's deaths first brought on lots of tributes and

praise for not only the girls who were well-known in Iran for their courage

and academic success, but even for the surgeons who performed the operation.

Then slowly came the blame and shame.

One of the most scathing of these was from the Bijani's adoptive father,

Alireza Safaian, a doctor himself who had raised the girls.

"When they took them to Singapore, I knew they would bring back their

bodies. They took them there and killed them," Alireza was reported to have

said.

There were also, upon hindsight, serious medical and ethical factors

involved in the outcome of the twins' surgery.

Dr Richard Nicholson, editor of the Bulletin of Medical Ethics, told BBC

Online that in most cases the risk of death would be rated too high for

doctors to proceed with surgery.

Dr Nicholson, however, conceded that imaging techniques were not

sophisticated enough to allow doctors to know with precision how surgery

would develop before they started.

"Doctors have a duty to act in the best interests of their patients, and in

retrospect one is bound to conclude that maybe this surgery (Bijanis) was

misguided," he said.

"These twins were not suffering from a life-threatening condition, and

although there were many things wrong with the quality of their lives, they

had coped for 29 years."

Dr Nicholson added that he had concerns about the fact that it would have

been impossible to brief each twin separately about the risks.

Thus it was possible that one twin could have pressured the other to go

ahead against her will, he concluded.

The Bijani debate was also a hot issue in discussions on international

disability chat rooms and newsgroups.

Some wondered if conjoined twins could be considered "disabled" at all,

whilst others called it a "spectacular disability".

Whilst almost everyone appreciated and respected the struggle that conjoined

twins had to go through to try to be independent of each other, they were,

however, more concerned about disabled persons being treated as "freaks" of

society where they needed to be studied by the medical world.

Sometimes society tends to go to extreme lengths to try and "fix" disability

hoping that it will go away - instead of doing the right thing by facing up

to a situation and offering societal support and total acceptance that

people with disabilities need, said one disability expert.

There were other more blunt questions and comments: is death considered a

"better" option than life for conjoined twins and severely disabled people?

(Incidentally, some chums with disabilities confessed to me that given the

chance, they would much rather go through life as a conjoined twin than to

be blind or crippled as they are now.)

Or could situations like that of the Bijanis and others be a subtle form of

eugenics (the race to create a better race) at play, or perhaps plain

scientific research being pushed to the limits to try and eliminate the

existence of disabled people by trying to "correct" those whom we perceive

as having "birth defects"?

Even if disabled people request for surgery, do they have access to relevant

advisors, say, other disabled people who would be in the best position to

proffer the right kind of counsel?

All this brings to mind my own extraordinary beginnings.

I was born with spina bifida, (a congenital condition of the spine) which

showed up as a lump on my lower back that was the size of a small marble

when everyone first noticed it.

The doctors at the time wanted to surgically snip it off to "improve my

fate" but warned that I would only have a 50-50 chance of survival.

They also said that with my disabilities and possibly newer ones that could

come later on, my life really wouldn't amount to much.

My family vehemently refused (thank God!) and I still have the lump with me

today except that it is about the size of a football now that's nicely

concealed by the back of my wheelchair.

Imagine for a moment the unthinkable if my parents had listened to the

doctors and gone ahead with the surgery.

Gosh, there just might not be a Wheel Power column today!