Protecting the unborn who have disabilitie

Protecting the unborn who have disabilities

It’s time for many of the critics of the Federal Government’s decision to cut Medicare rebates for early ultrasound tests to be up-front about why they’re upset.

Behind the rhetoric about denying choice and compromising women’s health is the more sinister reason for their discontent: the lost opportunities to search for and destroy unborn children with disabilities.

Not that many people have been prepared to put it that plainly.

But their intention is pretty clear: they object to the reduced opportunity to detect and eliminate "abnormalities" using abortion. The perception is that being born with a disability is a fate worse than death.

The demonising of disability is aptly demonstrated by the often-used phrase "severe foetal abnormality".

What this phrase really means is that all unborn children who can be detected with a disability, whether it be spina bifida, Down syndrome or another condition, will be in danger of abortion.

Both spina bifida and Down syndrome are disabilities which present great challenges, but with which many people in our community live happy lives.

These people are not the monsters implied by the offensive term "severe foetal abnormality".

The intolerance of our society for people with disabilities is demonstrated by figures released last year by the Australian Institute of Health and Welfare, which show that in 1987, about seven babies born out of every 10,000 had spina bifida.

By 1996, this had fallen to about three for every 10,000 live births. This fall was not achieved by some miracle of foetal surgery, nor by the increased consumption of folic acid.

In 1996, 46 per cent of unborn children detected with Spina Bifida were aborted, up from 7% in 1987.

Prenatal diagnosis, with the intent of selectively aborting unborn children because they have a disability, is blatant discrimination.

But why does this discrimination exist? Is it the parents’ fault? I don’t think so.

There are lots of parents out there who are scared that their child will have a disability not just because they are caring people, but because they know how difficult it will be for them and their child, often without adequate support for their special needs.

Often parents are given a particularly negative assessment of their child’s prospects if their child is identified as having a disability.

They know that their child must meet our society’s strict physical and mental standards, or be considered of lesser value.

IVF pioneer Dr Robert Edwards, at a conference in France last year, commented that "soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease.

"We are entering a world where we have to consider the quality of our children".

Disabled Peoples International put it best when they commented on a government discussion paper some years ago: "it is a particular tragedy that people should feel that there is so little social support and assistance, and that disability is so appalling that they should seek an abortion lest they raise a ‘defective’ child.

"Indeed, we question a social system which is prepared to fund the elimination and screening of people with disabilities, yet is not prepared adequately to fund the personal care and education services we need to lead autonomous, happy and successful lives in the community."

Cost is another factor that some commentators no longer feel embarrassed to raise.

The Canberra Times’ editorial of January 11 championed early ultrasound tests saying "... the costs may be justified given the long-term costs of bringing up disabled children."

The cost-benefit of allowing a person to be born must surely be a very difficult calculation, not the least because of all the intangibles like the happiness a person can experience just from being alive.

The benefit side of the equation is rarely addressed - it is assumed that a child with a disability will bring no benefit, no happiness to others.

More importantly, it is assumed that the child has no inherent value and that she or he can only be a cost.

During a debate on abortion law in the ACT in 1998, the ACT Department of Health and Community Care advised the Health Minister of the cost - but not the benefit - of every extra child born with a disability.

Ironically, though these life or death decisions often depend on the result of an ultrasound test, the recent Senate report "Rocking the Cradle" found that the tests are not 100% accurate and that sometimes babies are falsely identified as having an "abnormality".

"In some instances normal babies have been aborted because of false-positive diagnoses."

One submission highlighted by the Senate Committee said "I find that most women, once aware of the likelihood of false positive or false negative results with regard to ultrasound do not want the screening."

The more we are willing to accept and support people with disabilities as just a natural part of our community’s diversity, the more compassionate and accepting we will all become.

This discrimination against disabilities doesn’t just mean the end of many unborn children detected with a disability.

It also means that the lives of the people who slip through the screening net are devalued too.