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:
The Mirena IUD – a temporary option.…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?
Top Comments
Yes I agree completely with sterilization in some cases. I have a family member who was sterilized in her pre-teen years as she was about to go into a house where she would live with several other individuals with similar difficulties and they were looked after by a rotating group of carer's. (This family member in question incidentally, LOVED living there much more than living at home). She was sterilized due to concerns about puberty and also concerns about sexual conduct. It may not be what people want to think about or realize - but intellectual and physically disabled people are really extremely vulnerable in this respect to men and women who are prepared to take advantage of them. Sterilizing this family member helped (in part at least) to let her lead a happy, fulfilling life without the added issues that would have arisen without it.
I asked about sterilisation for myself and the hospital stated that they did not do sterilisations on women without any children because many of them came back to get the procedure reversed. My situation is that I was 27 (at the time) and have congenital heart disease with stage 2 heart failure, 60% lung capacity due to pulmonary hypotension, scoliosis, and or COPD, atrial arrythmias, am on warfarin and other medications that cause birth defects. It is extremely unlikely that I will be cured of these conditions before my childbearing days are over, and a pregnancy is likely to cause a permanent drop in cardiac functioning (to stage 3 or 4 heart failure which is virtually impossible to live with let alone raise a child), more arrythmias, a stroke, or possibly death, not to mention a heart defect or stillbirth for my baby. If I am not permitted to make an informed decision about sterilisation when I am over 18 and suffering a chronic disease which would make pregnancy disastrous for myself and my child, I can't imagine how difficult it must be to get this procedure for a woman who has an intellectual disability.