Imagine you have a daughter who is severely intellectually disabled.
Caring for her takes up all of your strength and your time. And as if you don’t already have enough to deal with, for about five days every month, everything gets worse. She gets her period.
She doesn’t understand what is happening. She finds the blood incredibly distressing and refuses to wear a pad. She is confused, upset and cannot deal with the situation on her own.
How is she supposed to live her life during those five days? How are you supposed to live yours? And now that she’s menstruating, what if your daughter falls pregnant? What if someone took advantage of her trusting nature and child-like innocence? Not only would this be tragic and unexplainable to her… but the baby would also become your responsibility.
If this was you – if this was your daughter – would you consider sterilisation? Should it be your right, as the parent of a minor or young woman with an intellectual disability, to order a hysterectomy and make the periods stop?
This is a question asked by thousands of parents in this situation, and next month they will have an answer.
Parents of children with disabilities could be allowed – or banned -from sterilising their children.
Last Wednesday, a Senate inquiry into involuntary or coerced sterilisation of people with disabilities in Australia held its public hearings. As expected, opinion was just as heartfelt as it was divided.
Instigated by Queensland Senator and disability advocate Sue Boyce (who herself has a daughter with Down’s Syndrome), the inquiry aims to explore the needs of carers and families as well as the rights of disabled women when it comes to the sterilisation of those with disabilities.
Currently, there are no clear numbers on the amount of sterilisations performed on disabled women and girls in Australia.
Since a High Court decision in 1992 called ‘Marion’s Case’ tried to outlaw the practice, numbers of steralisations are believed to have reduced significantly.
Families must apply to their state’s family court in order to get permission to go through with the procedure – and even then proof must be provided that there is a medical emergency or the life of the woman with the disability is under threat.
The United Nations considers involuntary sterilisation both a form of torture and an act of violence against children. The Australian Human Rights Commission recommends the practice be criminalised.
But what about the struggles of parents who are dealing with the distress of their daughters’ menstruation and possible pregnancy? In a written submission to the inquiry, the father of a 31 year-old intellectually disabled woman stated that:
We are aware of instances where parents have taken their daughters to Thailand or New Zealand to have a hysterectomy because their request to have a hysterectomy performed in Australia was rejected by the Guardianship Tribunal…
For a country that is allegedly as caring and compassionate as Australia, to have citizens undertaking such trips strongly suggests that the current situation is far from ideal and we believe that significantly greater flexibility needs to be demonstrated in our legal system and by bodies such as the Guardianship Tribunal when deliberating on applications.
And other parents agree. When the inquiry was announced last year, Mamamia published a moving submission written by the mother of a severely intellectually disabled daughter who had some confronting things to say:
“The reality is if this person had a child, that child would be dead within a week.”
“Bearing a child, and giving birth to a child, would be traumatic experiences for my daughter. She rings me or other family members every time she bumps her knee or gets a scratch, so I cannot even fathom the mental trauma childbirth would induce for her.”
“Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will? I feel like it is being proactive rather than reactive.
“Whilst her caring doctor and I could make it as comfortable experience as possible now, why would we wait until tragedy strikes and then in hindsight wish things had been different.”
But what about other options?
When the inquiry was launched in September last year, pediatric and adolescent gynecologist Dr. Sonia Grover told ABC National Radio that long-term yet reversible contraceptive methods were just as effective as sterilisation. The Minera IUD, for example, only needs to be inserted once, lasts five years and is able to prevent heavy periods as well as pregnancy.
Senator Boyce also raised some relevant points during that interview, about why sterilisation is necessary when there are other less-invasive options:
…we’re talking about a solution that would not ever be used on anybody else. There is no case whatsoever in Australia of any woman or girl being sterilised (except for a life-saving or other serious health issue), so why would we do this to women with disabilities? If there are problems, let’s unpack and solve the problems, not treat them in this eugenic fashion.
The problems Senator Boyce speaks of would appear to be a lack of resources for parents and carers who are already struggling with the demands of looking after a disabled daughter. Dr. Grover continued:
If they really think that their daughters’ periods are going to be something they can’t cope with, then they must be pretty close to the desperation line and that means we are not supporting those families as much as we should be supporting them.
So what’s the answer? What’s more important – the rights of disabled women to have control over their bodies, or the rights of their carers to choose what’s best or them?