When Stella Young was four years old, she broke her leg while on a family holiday in Adelaide. For Stella and her family, such an incident wasn’t uncommon. The disability advocate and editor of ABC’s Ramp Up was born with osteogenesis imperfecta, a congenital condition more commonly – and crudely – known as brittle bone disease. People with the condition typically have a deficiency of type 1 collagen. The biological consequences are bones that are more susceptible to breaks.
By the time Young turned up to have her leg set in plaster, she was thoroughly familiar with the inside of a hospital, having suffered more than 60 breaks in her short life. But this time would turn out to be a little different.
”As he was preparing to set my leg, the doctor turned to my parents and said, ‘We may as well go ahead and do the hysterectomy while she’s here,”’ reveals Young. ”It was just assumed that, for a girl like me, sterilisation was a logical choice.”
Her parents were horrified and refused to authorise the surgery. Other women haven’t been so lucky. And, as Young became old enough to understand the events of that day, she began to understand just how significant institutionalised discrimination can be.
The matter of forced sterilisation forms the subject of a Senate inquiry in Australia. The deadline for submissions to the inquiry was last month and the Senate committee will report on its findings in June. Already, the topic is garnering much attention from the media and the public.
Sadly, an overwhelming majority of opinions seem to be in favour of the practice – a poll conducted in the Brisbane Times last week showed at least two-thirds of respondents approved of the forced sterilisation of disabled people. Many of the respondents cited reasons such as practicality, concern for the welfare of children and the best interests of all concerned.
As Women With Disabilities Australia pointed out in its excellent submission to the Senate inquiry, the reasons used to justify forced sterilisations – which almost always are aimed at disabled women – generally fall into four broad categories: maintaining a ”strong” gene pool for the good of the state, community or family; recognising the incapacity for parenthood; and, bizarrely, the prevention of sexual abuse. (A uterus alone isn’t required to facilitate sex – the ”prevention” in this case is really about removing the evidence of abuse and lessening its more immediate consequences.)
Despite the truth being that these justifications really adhere to the best interests of carers, guardians, the state and a public whose experience of the disabled is almost solely governed by feelings rather than facts, ”all [of them are] couched as being in the ‘best interests’ of women and girls with disabilities”.
These aren’t new arguments. Our society has, quite rightly, agreed to stand against the abhorrent practice of eugenics – at least in theory. The genetic argument made in favour of sterilising the disabled indicates that, while we may not be comfortable euthanising our ”defectives” now, we have no problem with the flawed science of trying to breed them out.
Yet we have failed to adequately understand that morality and ethics don’t allow us to paternalistically deny people the rights to bodily autonomy or dignity simply because we’ve allowed them to live.
Sterilisation is almost always discussed as something reserved for the most intellectually incapacitated. But the extent to which the medical fraternity has elected to dictate the reproductive capabilities of women of vastly different levels of disability is astonishing.
What this practice suggests is that most disabled women are deemed defective and therefore it doesn’t matter what we do with them.
It may be true that there are a number of women with an intellectual disability so profound that they cannot realistically have a child and undertake all that is required of raising it, but being unable to experience the capabilities of their bodies does not mean we have a right to permanently alter them, particularly not when there are less intrusive methods of controlling menstruation and fertility. We are certainly not morally or ethically excused from doing so because we imagine the women in question to be so incapacitated mentally that they won’t know the difference.
I sympathise with the parents and carers whose charges are more challenging than most. But the best response to caring for some of our most vulnerable citizens should always be to provide more support. We don’t remove the limbs of quadriplegics to make them easier to bathe, and then reason that ”they’re not using them anyway”. Why should disabled women be any different, simply because we’ve decided that they either don’t know any better, or owe us a little flexibility over their ”unwieldiness” in return for their ongoing care?
We are either a society that cares for its vulnerable citizens as equal human beings and affords them the same rights given to all, or we are a society that makes a clear and honest distinction.
If our so-called respect for the sanctity of life really only translates to lip service, then what’s the point? What we’re really doing is turning disabled girls’ bodies into empty husks so that we can more easily ferry them from inconvenient birth to welcome death, and all the while pretend this is the mark of a compassionate society.Read the full story... (off-site)