Australia’s practice of sterilising women and girls with disabilities has drawn the ire of the United Nations, disability advocates and the Human Rights Commission for well over a decade. Yet it’s still not known how many of the procedures are actually performed.

A Senate inquiry into the issue is due to report back in April next year. Greens Senator Rachel Siewert, chairwoman of the Community Affairs Committee conducting the inquiry, says very little data exists on the number of procedures being carried out each year.

“We really don’t have a good handle on how many people are affected by these coercive, involuntary practices because the data just isn’t there,” she told Crikey. Siewert’s concerns reflect what many disability advocates have been saying about the official data for years: the numbers just don’t stack up.

Currently, all applications to sterilise a child with a disability must be made by parents or guardians, then approved by the Family Court or a guardianship tribunal (there is no suggestion that authorities are sterilising women and girls without their parents’ consent). Carolyn Frohmader, CEO of Women With Disabilities Australia, says it has long been suspected those laws are easily circumvented; that formal approval by court or tribunal is not being obtained in some cases.

“Our concerns are and have been for many years that there is no guarantee [that all sterilisation procedures have been legally authorised] and that this could be happening under the radar … there’s even instances where parents are taking their children out of the country to have this done,” she said.

The Australian Human Rights Commission has echoed these concerns. Disability Discrimination Commissioner Graeme Innes raised the issue as recently as last week, as he also did last year with S-x Discrimination Commissioner Elizabeth Broderick.

A 1997 report by the commission compared the number of sterilisation procedures approved by the courts to the number of sterilisation procedures performed by hospitals (contained in Health Insurance Commission data). The comparison showed that while courts had approved a total of 17 sterilisation procedures, 1045 girls had been sterilised in the 1992-1997 period. The health minister at the time, Michael Woolridge, disputed the figures, putting them at no more than 200; a Senate report tabled in 2000 put the number at only 22. A subsequent report by the commission in 2001 cautioned “considerable care” was needed in interpreting data, as it involved collating different sets of data from states which were not consistent or comparable. Nevertheless, in 2001 anecdotal evidence pointing to figures higher than official data prompted then attorney-general Daryl Williams to write to doctors warning them not to perform sterilisation procedures upon disabled girls without authority from a court or guardianship tribunal.

Despite the policy attention on this issue over the years, it has amounted to little more than squabbling between various parties about the number of sterilisation procedures being performed. Frohmader says this is counterproductive. “We know that this happens … even if the number being performed is one, that’s one too many,” she said.

Determining how prevalent sterilisation procedures are is just one point in the broad terms of reference for the inquiry, but Siewert believes that won’t be an easy task. “I know that’s going to be difficult because there does appear to be a discrepancy in the official statistics and health commission figures … that’s going to be very tricky for us,” she said.

At issue isn’t just the number of sterilisation procedures being performed, legally or illegally. The inquiry will also look at law reform — the issue disability advocates, the Human Rights Commission and WWDA have been pushing for, lobbying governments to ban non-therapeutic sterilisation of women and girls with disabilities. Lobbying has also come from the UN, which has criticised Australia for continuing to turn a blind eye to the practice, and its failure to legislate to prevent such procedures being carried out.

As recently as August of this year a report (“CRC/C/AUS/CO4“) from the UN Committee on the Rights of the Child singled out Australia for its continued practice of sterilising women and children with disabilities, saying the practice contravened Australia’s obligations under the Convention on the Rights of Persons with Disabilities. The report went on to say the committee was:

“Seriously concerned that the absence of legislation preventing such sterilisation is discriminatory.”

The UN Committee on the Elimination of Discrimination Against Women has also expressed concern about Australia’s approach to the issue, and in 2011 the UN Human Rights Council recommended Australia legislate to end non-therapeutic sterilisation in all children, regardless of disability. The rebukes have only resulted in sporadic bursts of media interest. Siewert believes politicians have shied away from addressing what is an extremely contentious issue.

“It has been addressed on and off at a federal level but then people have seemed to back away from it,” she said. “You can’t run away from the issue just because it is controversial and it’s time to look at this issue.”

Siewert is hopeful the inquiry will unearth fresh data, and lead to law reform. “I suspect that if we do manage to get hold of data it will shock some people and I suspect that there will be recommendations around the need to change some of our policy frameworks,” she said.