Disability advocates have recounted distressing tales of disabled women who learn they have been sterilised years after the fact.

It comes as Federal Disability Commissioner Graeme Innes raised concerns about the increasing number of procedures being carried out without court approval.

Stella Young, editor of the ABC's disability website Ramp Up, says she was almost sterilised as a young child.

"When I was four I was on holiday with my parents in Adelaide and I broke my leg while I was there and they took me to the hospital and they re-set my leg," she told PM.

"One of the doctors said to them, 'while she's here we might as well do the hysterectomy', which was shocking because I was a four-year-old child.

"My parents thankfully were very empowered and didn't take everything that doctors said to be gospel truth and they got me out of there as quickly as possible."

While she had a lucky escape, some children and women do not.

Christina Ryan, who works for the Canberra-based group Advocacy For Inclusion and represents Women With Disabilities Australia, says she has heard many distressing stories.

"We know of women who have gone in as young women, taken to hospital for another procedure and been sterilised," she said.

"Or been told that they're going to have their tummy fixed and then find out 20 years later that actually what happened on that day was that they got sterilised and nobody told them.

"We know of young women who have been sterilised without any knowledge on their part because of their cognitive disability on the assumption that they would never have a relationship or need to know anything about their sexual and reproductive organs and, finding out as an adult, that they have had this procedure undertaken."

Bypassing the courts

Space to play or pause, M to mute, left and right arrows to seek, up and down arrows for volume. Listen Duration: 4 minutes 32 seconds 4 m 32 s Concerns over sterilisation of girls with disabilities ( Barbara Miller ) Download 2.1 MB

The parents of some disabled girls want their daughters sterilised when they begin menstruating.

Applications have been heard by the Family Court since 1992, when the High Court ruled parents did not have the right to order the sterilisation of their children.

In a 2010 case a court ruled that a hysterectomy was the only option for an 11-year-old girl with Rett Syndrome - a profound intellectual disability with physical impairment - whose periods triggered epileptic fits.

Mr Innes says sterilisation can only ever be justified when there are compelling medical reasons.

But he says anecdotal evidence suggests the number of procedures being carried out without court approval is rising.

"People might do things like use different Medicare numbers because there's no Medicare number for this process that isn't linked to court approval, but doctors may find informal ways to do it and that's very concerning," he said.

He is also concerned that courts are approving sterilisation when they should not be - a concern he has written to state and territory governments about.

"If there is a need for better menstrual control or if there are concerns about sexual activity which may occur, then there are other far less radical ways to deal with those issues than the very invasive process of sterilisation," he said.

'Shocking intrusion'

Ms Ryan also takes exception to the arguments that sterilisation relieves young women and their carers from the burden of menstruation or that it is useful in preventing unwanted pregnancies.

"We would argue that people should have appropriate care so that it is not a burden and that young women don't need to have their bodies violated to make care easier," she said.

"Frankly, that's really a difficult argument to maintain although it's a very common one. To prevent unexpected pregnancy, we would suggest that frankly it's not an acceptable argument.

"We know that the level of sexual assault for women with disabilities is extremely high, and if this is another way to make it easy to get away with it then frankly it's completely unacceptable."

Disability advocates say sterilisation particularly in pre-pubescent girls can cause long-term health problems and many women struggle with the psychological impacts.

"There's still assumptions that the bodies of women with disabilities are not our own and that they should be subjected to control by courts and other people," Ms Ryan said.

"It's that level of lack of autonomy and that level of intrusion into your personal integrity that is so shocking and hard to reconcile yourself with.

"So in a country like this where we know and respect everybody as equals, it seems incongruous that we could be going ahead with procedures like this."