I'm pro-choice, but abortion can't be the only 'sensible' option when it comes to disability
OPINION: "I told my brother that if his child is like me, it's okay to abort," said Pete, shocking me into next Tuesday.
I stared at him, the words somersaulting in my brain. Why would Pete say this? How could Pete feel this? Did his sense of self-worth really deviate so dramatically from how I valued him?
"I've enjoyed my life," he qualified later. "My disability has afforded me perks. I've met a lot of my heroes … but I can't contribute to the economy."
This was debatable. As Pete's manager, I was keenly aware of his value as a volunteer. He'd provided our little not-for-profit with countless hours of free video editing. He floor-managed community television shoots and delivered disability awareness training to primary school students. To my mind, Pete's unpaid contributions to the economy far outweighed anything he received from it.
But Pete couldn't hold down a full-time job – his disability made his body too unpredictable – and this inability to meet able-bodied standards, he felt, tempered his worth.
It was with this exchange in mind that I sat down to watch Australian Story on Monday night – the tragic yet uplifting tale of Claudine and Dave Fitzgibbon, parents who terminated two pregnancies after discovering the foetuses had the same condition as Pete, spina bifida, a congenital defect causing the spinal cord to be exposed through a gap in the backbone.
Prognoses vary, but symptoms of spina bifida can include paralysis of the lower limbs, bowel and bladder dysfunction, learning difficulties and seizures.
After receiving the same diagnosis an unlikely third time, the Fitzgibbons decided to bring their son, Hector, to term anyway, trying a new in-utero operation intended to improve his quality of life. The operation went well, and we were left feeling hopeful for little Hector's future.
I also felt like I'd been through an emotional hurricane, because, for a feminist disability rights activist, watching stories on selective abortion is an exhausting exercise in processing cognitive dissonance.
I am 100 per cent pro-choice. A woman's reproductive autonomy comes first, regardless of her reasoning. But, as a disability rights activist, I find the sheer number of abortions taking place (8 out of 10 after a diagnosis of spina bifida) deeply disturbing, and reflective of the dangerously low value we place on disabled lives as a culture.
The frightening notion that our lives are apparently not worth starting (let alone living!) can unfortunately motivate otherwise progressive disability rights activists to become the political bedfellows of pro-lifers (an alliance pro-lifers are fond of emphasising, as it improves public perception of their humanity). If mothers won't give birth to disabled children voluntarily, the choice, they suggest, should be removed.
But the pitting of women's rights against those of disabled people is short sighted, especially as disabled women tend to bear the brunt of it when women's reproductive freedoms are restricted.
Australian Story inadvertently illustrated this last year by uncritically showcasing parents pushing for the sterilisation of their disabled daughter when she expressed ambitions of motherhood.
Instead, we might examine what leads to the choice to terminate such pregnancies in the first place. What misconceptions are held? What hardships are prospective parents trying to avoid?
Shari Robinson, a writer with spina bifida, had mixed feelings about Australian Story's portrayal of the issue. "There were no adults with spina bifida," she says. "There never is with this kind of thing. That representation is so important.
"A child might actually have a much higher quality of life than you think. So often these decisions are made from a place of fear. They might be less worried about how their child is going to cope if they had a range of perspectives beyond the medical."
Watching the Fitzgibbons agonising over their decisions, witnessing their heart-wrenching grief, it was clear that they genuinely wanted to have these children, but had come to believe that life would be unrelentingly unhappy for them. With scarce time to make the life altering call, they did the best they could with the information available.
But what if it were standard procedure to offer prospective parents an interview with someone like Shari or Pete? Someone with the benefit of lived experience?
Indeed, with more time to engage in more research, the Fitzgibbons did eventually decide to welcome a disabled child into their home, and the proud smiles in the family portraits say it all.
The lived experiences of people with disabilities are not all roses of course. We still struggle with discrimination and lack of access. Medical procedures can be expensive, and lack of funding for equipment and support can make independence difficult to achieve for some. Parents, most often mothers, still take on the bulk of care roles, which can strain relationships.
Pete believes he may have saved his parents' marriage by moving into a hostel at sixteen.
But these circumstances are not immovable. They are socially constructed problems requiring social solutions. More collective approaches to raising children might be key to easing the workload of carers. An improved healthcare system, an effective NDIS and more accessible infrastructure would make an enormous difference.
Public awareness to combat fear of the unknown is vital, and in this, people like Shari and Pete are already leading with progressive writing and volunteer school programmes to educate kids.
A foetus does not have a right to life, but disabled people have a right to quality of life. If we can bring ourselves to truly recognise the inherent value of disabled people, embrace diversity and remove the social and financial barriers to inclusion, selective terminations will stop feeling like the only sensible option.
- Sydney Morning Herald