Disability ruling caused huge offence

The disabled feared further alienation from society

		By Hugh Schofield in Paris

The "Perruche" ruling, which has now been consigned to a footnote in legal history, deeply offended many disabled people in France.

Certain judges think it is better to be dead than handicapped

Xavier Mirabel

Established in November 2000, the ruling said that a 17-year-old boy - born badly brain-damaged because of his mother's rubella - could claim damages from the doctors who failed to spot his disability in the womb.

This swiftly was turned into a media shorthand. The universal version was that the courts had laid down a child's "right not to be born".

Nicolas Perruche would have been aborted had his mother been properly diagnosed, so he deserved compensation for being alive.

Precedent extended

Campaigners for the rights of the disabled were perturbed by the ethical implications, especially after the ruling was followed by two similar judgements.

The child suffers not from being born - but from the disability

Gilles-Jean Portejoie, lawyer

In one of them, the child in question was not severely brain-damaged but had Down's Syndrome - suggesting that the precedent was being extended to much less serious afflictions.

"Certain judges think it is better to be dead than handicapped," Xavier Mirabel of the Collective to Stop Discrimination Against the Disabled says.

Doctors had their own objections to the ruling.

They believe they have been unfairly penalised for failing to have a 100% success record in spotting defects in the womb - something which they say is not realistic. Some have gone on strike.

Scary world

But for the disabled, the fall-out was more profound.

Ultrasound is not 100% reliable in detecting problems

Many felt the ruling implied that life with a disability was not worth living.

They feared their marginalisation in society would be increased still further.

Others said the ruling would lead to a scary world of eugenics.

Fearful of being sued, doctors would recommend abortion at the slightest hint of a problem.

Disabilities - even minor ones like a hair-lip - would become unacceptable.

"What is unbearable about this debate is that we - disabled people - have the feeling that we are 'in the way,'" Jean-Christophe Parisot, president of the Collective of Disabled Democrats said.

"The Perruche ruling reveals the total incapacity of our society to see disability as a richness, and its rejection of anything that is different."

Financial burden

Under the new law, only the parents will be able to sue a doctor for damages - and then only if the error is "blatant," in other words, if the doctor actually caused a disability, or overlooked something that should have been obvious.

We have to break out of this spiral which condemns abnormality, and calls human-beings 'mistakes'

Jean-Christophe Parisot

But not everyone is satisfied, and many say the original problem that first led to the Perruche affair has yet to be addressed.

This is the lack of state provision for disabled people, particularly those who have reached adulthood.

Most are unable to find places in homes, and end up as a huge financial burden on their parents.

It was after all in recognition of this, that the judges, who ruled in the Perruche case, made their decision in the first place - in order to relieve the difficulties of the boy's parents.

"There have to be concrete measures to increase assistance, because every life has a value," Parisot says.

"We have to break out of this spiral which condemns abnormality, and calls human-beings 'mistakes'."

Some even say that the Perruche ruling has been misinterpreted, and that the government is legislating to supersede it under the pressure of an ill-informed public opinion.

"The court never said there should be damages for the mere fact of being alive. It said there should be damages for suffering," says Gilles-Jean Portejoie, lawyer for one of the families that benefitted from the ruling.

"And the child suffers not from being born - but from the disability."