Down below is a quaint euphemism for the nether regions, and this tale is tale of trouble down below, of troublesome menses, and by coincidence it happened down under, in Oz. A family court judge ordered the hysterectomy of a severely disabled 11-year-old girl, and in so doing unleashed a storm of protest from the right-on people-first brigade, who accused the judge of sexism, of forcing sterilisation on the disabled, and, in so doing, acting in a manner ‘incomprehensible in the 21st century’.
At first glance, Angela’s case appears clear-cut, and the ruling, though delicate, defensible, and the protesters more wrong than right-on. Angela (a pseudonym) was born with Rett syndrome, a rare genetic condition that causes a raft of disabilities that means she needs constant care for just about everything. Two years before the hearing, her periods started, which became irregular and distressing, and caused anaemia, and, according to her parents, aggravated her epilepsy. A full variety of medical treatments had failed, and her parents applied, as Australian law requires for special – that is to say invasive and irreversible – medical procedures on children, for a court to order the only remaining treatment, a hysterectomy. The judge, after hearing much medical evidence, found himself satisfied that hysterectomy was in the child’s best interest, and ordered that the operation should proceed.
Right away, the right-on brigade re-branded the procedure as a sterilisation, which indeed it is, but only as a side effect if the primary intent is to control menstrual bleeding, and whipped up a storm of anti-eugenic, anti-meddling with the bodies of the disabled protest. A senator and former Down’s Syndrome Association president said the decision was incomprehensible, adding ‘Every Australian would be appalled if an 11-year-old girl without a disability was sterilised. It’s completely discriminatory and inhumane to treat a girl with a disability any differently’. Others screeched sexism: it was ‘only ever the disabled girls…never a boy’ who get sterilised; and the call for a law banning the sterilisation of disabled children was renewed.
On the face of it, forcing a profoundly disabled girl who is both incontinent of urine, and unable to wash herself, to endure irregular and distressing periods, anaemia and an aggravation of her seizures might appear more inhumane than putting her through the trauma of surgery; all the more so when the matter of sterilisation has little real bearing, given that pregnancy is – or should be, despite a paediatrician’s remark that pregnancy would be ‘disastrous’, thereby putting the card on the table – extremely unlikely, despite the fact that life expectancy in Rett’s can extend into middle age. “Outraged of Brisbane’s” sexism argument fails on a somewhat central anatomical point – only women have a uterus, and so only women will suffer sterilisation as a side effect of a hysterectomy done to control menstrual bleeding.
But when we look more closely at the pro-hysterectomy argument, the clarity begins to cloud. If – despite the paediatrician’s unfortunate gaffe – the hysterectomy is only intended to control the bleeding and aggravation of seizures, then the measure does appear somewhat draconian. Many teenage girls suffer tiresome periods – but we don’t rush to remove their uteruses: we manage the problem while it lasts in other less invasive ways. And if – as seems likely – the operation was indeed a hysterectomy, and a hysterectomy alone, that is to say with conservation of the ovaries, then the ovarian hormonal cycle – the putative trigger that aggravates epilepsy – will often also remain (ovarian failure post-hysterectomy is by no means certain), such that the proposed benefits of the operation are markedly compromised.
And others, others considerably more disingenuous than Dr No, have – despite the judge’s assertion that no such argument had sullied his reasoning – gone so far as to say that the motive for surgery was not Angela’s best interests, but the parent’s wish to shot of a tiresome and messy inconvenience; such that the operation was more for the parent’s benefit than the child’s.
Unsurprisingly, the right-on brigade have demanded that the Federal Attorney-General appeal the order to operate. Should the Attorney-General allow the appeal to proceed? The eugenic overtones of forced sterilisation, even if the primary intent is menstrual control, of a disabled child is an emotive subject, all the more so for the added frisson of hysteros, even of witchcraft, with its ancient links to menstruation, such that a case could be made that an appeal, in the public interest, has merit. But, on balance, Dr No thinks not. The original judgement was carefully considered and yet remains finely balanced; and in such position it seems right that the will of the parents, who have after all walked the walk, should – provided we are satisfied on their good nature – prevail.
Similar cases have come to the attention of the media in recent years. The first being Ashley X, the Seattle girl who underwent what was to become to be known as The Ashley Treatment in 2004. The hospital that carried out the surgical procedures later admitted that it was illegal as a court order had not been obtained. Please see http://en.wikipedia.org/wiki/Ashley_Treatment for further details.
The second case was that of fifteen year old Katie Thorpe in 2007. Her mother Alison had provoked an ethical row by getting the backing of doctors to remove Katies’s womb with the intention of improving her “quality of life” in adulthood. Katie cannot walk or talk and needs round the clock care. Her mother was concerned that her daughter would be unable to express that she was in pain during menstruation. A hospital consultant took up her case and sought legal approval to carry out the procedure as it was not medically needed.
The expected furore ensued from the right-on brigade. The most ridiculous comment http://www.telegraph.co.uk/news/uknews/1565509/Disabled-girl-to-have-womb-removed.html came from Scope and was: “Scope does not believe that a child should be modified to fit society but instead that society needs to adapt and become more inclusive of disabled people.” What did they mean? Can society decrease period pain and discomfort by understanding?
Needless to say, the hospital backed out. http://www.guardian.co.uk/society/2008/jan/19/nhs.healthandwellbeing Were they considering Katie’s best interest and well-being or probable negative media coverage if the procedure went ahead? The latter I think!
Around the same time as Katie’s case became known to the media, Kim Walker was requesting the same procedure for her daughter Olivia. See http://news.bbc.co.uk/1/hi/england/merseyside/7034623.stm As with Katies’s mum, she expressed concern that alternative procedures – contraceptive pills or implants – would increase the risk of thrombosis as both daughters were not ambulant.
Angela’s case echoes that of Ashley X. Both experienced precocious puberty. Menstruation is not a wonderful experience. Sure, some women may breeze through it with little discomfort – but I have yet to meet one! Above and beyond painful cramps, there are other physical and psychological symptoms. Many women view a hysterectomy (when medically needed) as liberating, but they do not realise this until after the event.
I wish the right-on brigade whould jump right-off some high building and land in the real world. Every case should be considered with the child’s best interest and well-being at heart and not be swayed by the do-goody-goody zealots who wish to impose their ill-founded and ill-thought out beliefs on us all, and to the detriment of a disabled child.