The Australian Government is currently holding a Senate Inquiry into the involuntary or coerced sterilisation of people with disabilities. It has sparked widespread heated debate and the media interest has been substantial.
In 2011, the United Nations Universal Periodic Review for Australia recommended the creation of national legislation banning non-therapeutic sterilisation of any child and also of any adult with a disability without their informed consent.
At present in Australia, the parents of a child or disabled woman, are required to seek an order from a Court or Tribunal in order for a hysterectomy to be undertaken on their daughter.
Talking to ABC Radio on 11 March 2013 the Federal Disability Discrimination Commissioner, Graeme Innes, said “it’s a very outdated and a very negative decision for other people to be making about people with disability”. He claims there are many alternative options these days and is recommending to the inquiry that sterilization of women and girls with a disability be banned, except in a medical emergency (read more).
However, many parents of disabled girls apparently feel quite differently. The Sydney Morning Herald reported on 28 March 2013 that parents are being forced to take their daughters overseas for a hysterectomy when their requests here are denied. One mother of a 16 year old girl was quoted as saying “this decision should include the input of the one person who cares for her every need in life. It’s not about me, but about enabling me to provide the best support possible for my scared and overwhelmed daughter” (read more).
RANZCOG president, Professor Michael Permezel, was quoted by the Medical Observer on 4 March 2013 as stating “It would be very sad if a country like Australia was unable to provide optimal care”. Prof Permezel indicated that RANZCOG is of the opinion that, despite the availability of long-acting reversible contraceptives (such as Mirena and Implanon), there is still a small number of disabled women for whom hysterectomy may be in their best interests (read more).
Perhaps the division of opinion could be partly resolved with clearer definition. There are probably very few people who would argue that a girl or woman, capable of giving informed consent, should be sterilised against her will. Where the girl or woman suffers an intellectual disability that means she is incapable of giving informed consent, the law has a well developed means of allowing a substitute decision maker to act in the best interests of the disabled person. However, where a decision is to be made in relation to “special medical treatment” (such as hysterectomy) the authorization of the Guardianship Tribunal is required. Where the parents of a girl or woman are seeking for such a procedure to be available to their daughter, it is hard to conceptualise those circumstances as ‘involuntary or coerced’.
Review by a Court or Tribunal seems like a reasonable and robust safeguard the to the inappropriate sterilization of girls or disabled women. However, it is at this juncture that parents of disabled women and girls are reportedly encountering difficulty. It is also this possibility of review by an independent body that would be abolished if the recommendations of the disability commissioner are accepted and there is a total ban on sterilization of girls and disabled women.
There are few medical procedures that are banned in Australia; female circumcision is one procedure that is; euthanasia is also illegal. But for the most part, the law has always recognised the individual autonomy to decide what is best for one’s own health and well-being. While the UN has deemed forced sterilization torture, it does not suggest that the very same procedures be made unavailable to women with full capacity who choose to undergo them. If a competent female was to consult a gynaecologist requesting a hysterectomy, having finished her child-bearing and perhaps no longer wishing to endure the discomfort of menstruation, I suspect that after a long discussion regarding the risks and benefits, the procedure would be available to her if she desired.
Families raising disabled girls or caring for disabled women deserve the support of our community, together with our empathy and compassion. Where parents have reached the difficult decision in consultation with medical staff that a hysterectomy is in their daughter’s best interests, it seems hard to justify removing a treatment choice that for some may be the only option that can provide an acceptable quality of life. Surely with safeguards such as the Guardianship Tribunal, accepting that its processes may need to be reviewed, fears of inappropriate procedures can be allayed without the need for a blanket ban.