AUSTRALIA: Parents of intellectually disabled girls deny sterilisation breaches human rights

[17 July 2013] - 

Parents of intellectually disabled girls have spoken out in favour of sterilisation, saying it gives their daughters a better quality of life.

Australian Disability Discrimination Commissioner Graeme Innes says the practice is a breach of human rights and needs to be banned.

A senate committee is expected to report on the issue today, and its findings are bound to provoke passionate debate.

Louise Robbins knows how agonising the decision to sterilise can be. Her daughter Eliza, 16, was born with a high dependency intellectual disability.

When Eliza began menstruating four years ago, the family was not prepared for the added difficulties it would create in caring for her.

Eliza becomes so distressed she often mutilates to try to stop the blood flow or finds herself in embarrassing situations after removing a menstrual pad in public.

The family considered chemical contraceptives to inhibit Eliza's monthly cycle, but she will not take oral medication and cannot have an implant because of an immunity condition.

Ms Robbins and her family believe sterilisation is the only option. She says her daughter cannot consent to the procedure as she does not even "understand when to have a shower".

"Eliza didn't consent to the 38 general anaesthetics that she's had but they were all done in Eliza's best interests," she said.

"Our hysterectomy decision is purely based on menstrual care. It's not about myself being comfortable, I'm quite happy to change her pads for the rest of her life.

"It's about Eliza having some kind of dignity - a quality of life where she can go out into the community and experience life as to the best of her ability.

"This is the only option we have to make any kind of difference to Eliza's life, so don't judge me.

"Look at us as an individual case before you make any kind of decision and judge us on what you think is best for Eliza."

'We did it because we love her'

Like Eliza, the onset of puberty caused significant problems for Sophie Carter.

The Carter family tried to educate Sophie on how to use pads, and when that did not work they tried contraceptives.

"At that stage we gave her injections to stop her menstruation for three months, but then as time went on we realised that this was probably not a very healthy thing for her," said Sophie's mother Merren.

"It causes side-effects. We weren't prepared to compromise her long-term health just for managing menstruation so we started to look at other possibilities."

Ten years ago Sophie underwent surgery to remove her uterus, after a New South Wales guardianship tribunal agreed a hysterectomy was in her best interests.

It was not an easy decision for Sophie's parents.

"It really upsets me to talk about forced sterilisation because it sounds like we did something terrible to our daughter, but in actual fact we did it because we love her and we want the best for her life," Ms Carter said.

Claims practice breaches basic human rights

Mr Innes believes sterilisations for intellectually disabled women and children should no longer be possible in Australia.

"It's a basic human right. It's a basic question of bodily integrity for women and girls with disabilities that these procedures shouldn't occur unless a person gives free and informed consent for it to occur," he said.

"The difficulty with best interests, and the interpretation of best interests, is how it's interpreted. I guess my concern is often that the best interest of the person with a disability is interpreted in a very broad way which in fact can include the best interests of members of family and carers.

"And if you look at some of the outcomes, those are factors that are being taken into account."

Mr Innes has put his view to the senate inquiry, which is determining whether Australia's current guidelines meet United Nations obligations to protect the rights of people with disabilities.

Specifically, the committee is examining whether non-life threatening or elective sterilisations should be banned or whether there are circumstances where it should be permitted under tougher Commonwealth guidelines.

"We ought to ensure that coerced or forced sterilisation of women with disabilities should only occur with their free and informed consent," Mr Innes said.

"And sterilisation of children with disabilities or children should not occur at all."

It is a position endorsed by Katherine Knight, whose daughter Amelia has an intellectual disability.

Ms Knight believes families would not resort to sterilisation if they had better support and education.

"She is a young woman and as you can see a lovely young woman. Her bodily process are part of her identity and this is a really important part of who Amelia is," she said.

"She is a person and a woman and her disability is far below either of those aspects of her identity.

"Just as her sisters have gone into womanhood so has Amelia ... a different womanhood."

 

FURTHER INFORMATION:

pdf: http://www.abc.net.au/news/2013-07-16/parents-of-intellectually-disabled...

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