Paru le mardi 9 mars 2010 sur The Telegraph

Source
www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/7405283/Parents-win-right-to-have-disabled-daughter-11-sterilised.html

Parents win right to have disabled daughter, 11, sterilised
The parents of a profoundly disabled Australian girl have won a court case to have the 11-year-old sterilised, prompting claims the ruling amounts to an "abuse of human rights".

Bonnie Malkin in Sydney
Published: 5:02PM GMT 09 Mar 2010

The girl, known only as Angela, suffers from an extreme form of the neurological disorder Retts Syndrome. She cannot communicate and "acts as a three-month-old baby would".

Angela's parents had sought permission from the Family Court for doctors to perform an irreversible hysterectomy – the removal of her womb – to stop Angela's menstrual cycle, which they believed was the cause of her epileptic seizures, and lessen her distress.

Other medications had not worked and three gynaecologists had agreed that a hysterectomy was the best solution, she said.

However, Queensland Health, the government body responsible for carrying out the surgery, would not approve the procedure without a court order.

Justice Paul Cronin, ruling in the Brisbane Family Court, said the decision would improve Angela's life and was "in the child's best interests". He said the procedure was "urgent and necessary".

"Angela is never going to have the benefits of a normal teenage and adult life," the judgment read.

"A fundamental consideration is ... the risks to Angela's life as well as her general health."

The court heard Angela could not speak or control her movements and relied on her parents to be fed, transported and washed. She had no bladder control, wore a nappy and had a special walking frame because she could not stand unsupported.

A paediatrician said pregnancy would be "disastrous" for Angela.

Despite the statements from the medical profession, the ruling has incensed disability groups. They claimed that forced sterilisation of any girl was an abuse of human rights and that in this case it was being used as a "quick fix" for a complex situation.

Carolyn Frohmader, chief executive of Women with a Disability Australia, has campaigned for a law banning the sterilisation of disabled children.

"It is only ever the disabled girls," she told the Australian newspaper.

"When you go through the cases, there is never a boy, no matter how intellectually disabled, who has to be sterilised."

Therese Sands, executive director of People with Disabilities Australia, said she was "alarmed to hear that children are still being sterilised".

"It is our view that nobody has the right to sterilise a child, not a judge, not a parent, not unless it's a matter of life or death."

But not all disability advocates agreed.

Mark Patterson, National Council on Intellectual Disability executive director, admitted the issue "is a very difficult one".

"These families have been through a lot, and done all they can, and throw their hands up and say 'What more can I do?'," he said.

"I think people should give them a bit of a break."

In Australia, parents are ordinarily able to make decisions about medical treatment for their children without consulting the authorities. However in 1992 the High Court found that serious, invasive, irreversible medical procedures required the permission not of parents but of the courts.

Angela's case echoes that of Ashley, a severely disabled American girl whose parents controversially opted to use a course of surgery and hormone supplements to stunt her growth.

Ashely, who suffered from a severe brain impairment and was not able to sit up, walk, talk or eat without assistance, underwent a hysterectomy and was given hormones to prevent her growing more than 4ft 5in (1.3 metres) or weighing more than 75lb (34kg)

In 2007, when her case came to light, Ashely's parents said that they had decided to act because they were anxious about the impact that fertility and her rapidly increasing size and weight would have on the quality of her life. They feared that she would become too big one day to lift, move, take on a family outing.

However, the treatment, which included excising her breasts and putting her on a course of oestrogen, provoked outrage among organisations representing disabled people and some doctors, with many asking why a course of treatment that would not be considered for an able-bodied person should be allowed in this case.