DO yourself a favour. Stop what you are doing, log on to YouTube and watch a short film called Be My Brother.
Starring Gerard O’Dwyer and created by 20-year-old Genevieve Clay, Be My Brother took out the award for best film at the 2009 Tropfest. Gerard was named best actor.
Gerard is a young man with Down syndrome who takes prejudice by the throat through humour and charm.
He disarms people. The last few seconds of the film are a celebration of unadulterated affection and acceptance.
Now meet Melissa Riggio.
In a National Geographic piece entitled ”I have Down syndrome: Know me before you judge me,” Melissa wrote: “When my mum first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different”.
”But having Down syndrome is what makes me ‘me’. And I’m proud of who I am.”
But Melissa knows about prejudice.
She says: “I still have to remind myself all the time that it really is OK to just be myself.
“Sometimes all I see – all I think other people see – is the outside of me, not the inside.
”And I really want people to go in there and see what I’m all about.”
Melissa challenges us: “I can’t change that I have Down syndrome, but one thing I would change is how people think of me.
”I’d tell them: Judge me as a whole person, not just the person you see.
“Treat me with respect, and accept me for who I am. Most important, just be my friend.”
But there are some who think Gerard and Melissa shouldn’t be here at all.
In the British Journal of Medical Ethics recently, Melbourne academics Alberto Giubilini and Francesca Minerva argued for “after-birth abortion”, a euphemism for the killing of newborns.
The killing of infants is legitimate, they wrote, “if a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden”.
Babies with disabilities are obvious first targets of such arguments.
In my book Defiant Birth: Women who Resist Medical Eugenics (Spinifex Press, 2009), I argued we live in a society intolerant of those judged imperfect.
The contributors spoke of how they faced disapproval for having babies with disabilities. But they refused to go along with social prejudice.
The academics’ views, in a prestigious journal providing ethical education to the medical profession, make it harder for those women and for their children.
They fuel the idea that it is a woman’s duty not to “burden” society with their child.
It’s already hard for families with disabled children to find proper help and care in a society backing away from collective responsibility for those who are vulnerable, questioning sharing the costs of healthcare services with those with special needs.
Many more children become disabled at or after birth than those who had a disability before birth. Will utilitarian academics argue they should be done away with as well?
Jay Jeffries is a Melbourne mother of two boys, including Tuscan, aged almost 4.
She told me that when she saw Down syndrome especially cited as a reason for infanticide, “suddenly I felt a very deep sickening feeling. I wanted to vomit. That’s my boy you’re talking about, that’s my toddler you’d be killing off”.
“When my son was born they placed him on my chest, his eyes were wide open.
”He made a little cry and I kissed him over and over and played with his fingers. My husband wept tears of joy,” Jeffries said.
“We knew from 15 weeks that he had Down syndrome. We knew he had a heart condition and would need surgery in the first three months of life, yet still we wept tears of joy.
”He had survived. He was our little fighter!
“We didn’t see his disability, we just saw the red mop of hair, the little fingers and his innocent eyes.
“When I think that someone in that moment might have suggested killing him, I feel rage! I wanted to protect him from all the bad things in this world. These are a mother’s natural instincts.
”What would become of a society that squished these desires, and moved straight to a cold analytical assessment of the child?”
I wonder if the real disability is not with the child but instead with society’s inability to see its intolerance of imperfection.
Julia Anderson, wife of former deputy prime minister John Anderson, wrote in Defiant Birth of what she learned from their son Andrew, who had Down syndrome and died at six months: “To see that we are all imperfect, just in different ways.”
I’d rather a world with Gerard and Melissa and Andrew and Tuscan in it than a world of powerful people who deny their right to be here.
As published in the Sunday Herald Sun, April 22, 2012
