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
5 Responses
Melinda,
Thank you for today’s Herald Sun article on Down Syndrome and disability. It is appalling that anyone would advocate something as sinister as ‘after-birth abortion’ and hopefully this is something that has never actually occured in our society. As you pointed out, if this had been practiced, we would be missing out on the contributions that people with disabilities are making to society.
Last year my wife and I, along with another couple, bought a cafe for the sole puropse of giving permanent employment to people with intellectual disabilities. We had observed that many people with disabilities were either unable to gain employment or were being given temporary, government subsidised, positions and discarded when the subsidies dried up.
We employ 10 people with disabilities in our cafe and all 15 staff are paid full adult wage regardless of their abilities. All of our staff contribute to the running of the cafe in various ways depending on their abilities. What is very important is that all of our staff have different personalities and every one of them contributes to the culture and atmosphere of the cafe in their own way.
Some of our staff are aged in their late 20s through to late 30s and most have never had a paid job in their life! Like Gerard O’Dwyer in ‘Be my Brother’ all they want is to be treated like everyone else and to work and contribute to society.
I hope your article is successful in making more people aware of the need to always see the person and not the disability.
Regards
Gary Tyquin
Blue Door Cafe
654 High Street
East Kew VIC
“The Nazi persecution of persons with disabilities in Germany was one component of radical public health policies aimed at excluding hereditarily “unfit” Germans from the national community. These strategies began with forced sterilization and escalated toward mass murder. The most extreme measure, the Euthanasia Program, was in itself a rehearsal for Nazi Germany’s broader genocidal policies. The ideological justification conceived by medical perpetrators for the destruction of the “unfit” was also applied to other categories of “biological enemies,” most notably to Jews and Roma (Gypsies). Compulsory sterilization and “euthanasia,” like the “Final Solution,” were components of a biomedical vision which imagined a racially and genetically pure and productive society, and embraced unthinkable strategies to eliminate those who did not fit within that vision”
from the United States Holocaust Memorial Museum website: http://www.ushmm.org/museum/exhibit/focus/disabilities/
And so …. it starts again only this time with newborns. What a quaint term “after-birth abortion”. So clinical, so sterile, so final – such a quick and painless solution for developing a nice little society of severally normal human beings who will never place a burden on the public purse. Oh wait a minute, what about those who become sick or disabled later in life, the alcoholics, the drug addicts, those with terminal diseases. What about those who become physically incapacitated, paraplegics, quadraplegics, burns victims, or those who are have a mental illness. Hey, dont forget about the cancer sufferers or those with heart disease – millions of health dollars wasted there too. And finally, there’s the elderly. Kill ’em all, and let God sort out the mess later.
But we dont really want to do that do we Alberto Giubilini and Francesca Minerva? Do you know why? BECAUSE THAT WOULD BE WRONG. YES, WRONG!!! It was wrong 65 years ago when your nationalist socialist like-minded colleagues did it, its wrong today and it will always be wrong. When people start rationalising about the extermination of cohorts for whatever screwed-up reason, its time to pick up our guns and take aim at them cos sure as hell, its just the beginning. These so-called brilliant minds need to be stopped dead in their tracks as soon as possible.
By the way, my 22 year old son has Downs and he is the light of our lives. He had a suspected hole in the heart when born and was then diagnosed with ideopathic neonatal hepatitis and was given 18 months to live. He got through it with the help of a lot of heavy duty prayer and love. He is non-verbal, requires assistance in just about every daily activity, has moderate to severe hearing loss and has some behavioural problems. But he is the sweetest person in the world, and loves life. His existence has also made us stronger and better people (we’ve been through the fire many times).
The whole world needs to recognise the fact that it is our differences that make us human. That is our very humanity. And it is our humanity which compels those of us who are strong and capable to help, care for and advocate on behalf of those who are not. Where family is involved, it further compels us to want to do extreme harm to those who, by their words and actions, de-value and threaten our children.
My final words to these so-called academics (and any other nazi-minded individuals), if you dont have anything good and righteous to say, best to keep your fucking mouths shut.
Thank you for this moving and important article Melinda.
What is perfect?? Am I perfect or are you perfect? is blue eyes the perfect ones or maybe green eyes are better!! What about our height? What is the perfect height? This article and some of the sayings therein goes back to what Hitler was about. Having the perfect race of people and killing off all others. This is how it starts….could be another world war coming if some nations adopt this thinking….Legalising abortion and euthanasia started it all because you can do away with the unwanted that are not PERFECT. Pray really hard that the world does not go down this road again.
I once had a very insightful argument about abortion based upon this. Myself, being a Christian and a women who was a Muslim where discussing abortion with two other women who were summer interns. Now it was passionate though polite discussion until the argument came up that it is better to kill the baby than to let them have a miserable life / bad life or bad family.
I didn’t realize that up until this time that my Muslim women colleague had been raped / child abused (which in itself is a major trauma, but for Muslim women it is much much worse). I have had dyslexia and other “significant” abuse issues. So we both saw that they were saying it would have been better to kill us, rather than let us suffer our tragic upbringings.
Needless to say we both blasted away that argument………. even without resorting to swearing or shouting! There was muted silence from the other two women…….. we all worked for a Biotech start up, all highly qualified and looked “successful”. It shocked them that we could have had such a difficult past, yet appear so “normal”.
I could talk about how these abuse issues let to burnout and breakdown, serious depression, suicidal thoughts for years on end, or I could talk about my wonderful wife and kids and the blessed (still difficult) life that i have.
Totally makes me mad that people can say that terminating life (at any age), because of pain or suffering that may/will go on.