"The problem with the argument is that research constantly suggests that the majority of people with disabilities don’t see their lives as being terrible" ... Alecia Simmonds
My first meeting with Toby saw him bounding into the library with scraps of paper tumbling out of his satchel, garbling apologies for the fact that he was one hour late. Luckily, he had a mischievous grin that won him instant forgiveness.
In the year that I tutored him we had vigorous political debate (anyone to the left of George Bush was "a communist"), he thrilled to Australian history (particularly Menzies), and he informed me on a weekly basis that I was most definitely "not hot" (not like my flatmate, who was more to his taste).
We are shocked by sex-selective abortions in China, so why aren’t we shocked when this applies to people with disabilities?
Toby has autism, but his cognitive and physical impairments haven't prevented him from leading the happiest of lives. He completed an arts degree, has a large and loving circle of friends, and plays in a spectacularly unsuccessful AFL team.
Toby was lucky to be born into a supportive middle-class family - but soon we may say that he was lucky to be born at all.
News recently broke that researchers are in the process of designing a screening test that could point, before birth, to the likelihood of autism. While health professionals were quick to say this could help parents prepare for having an autistic child, it could also, more obviously, help parents decide whether they actually want an autistic child at all.
Pregnant women can currently undergo tests to detect Down syndrome, cystic fibrosis and other chromosomal abnormalities. And if it seems like you’re seeing less kids with disabilities than a few years ago, your instincts are probably correct; the rate of women who choose to abort upon a diagnosis of Downs syndrome has shot up, being as high as 90% in Germany. As a society it seems we're on a nightmarish quest for biological perfection and crushing normality.
I think we should pause for a moment and ask what weeding out such differences from the human gene pool means, not just for the status of people with disabilities, but for a society that supposedly values human diversity. We are shocked by sex-selective abortions in China, so why aren’t we shocked when this applies to people with disabilities?
According to one school of thought, testing for disability is like testing for medical problems: doctors are simply looking for physical or cognitive differences that deviate from what's 'normal' and which will cause harm to the person. Sociologist John Harris argues that we have a moral responsibility to "protect future individuals from terrible conditions that will blight their lives", and like-minded people point to the inability of people with disabilities to lead supposedly worthwhile lives.
The problem with this argument is that, aside from those living with conditions that cause unpredictable pain, research constantly suggests that the majority of people with disabilities don’t see their lives as "blighted", or their conditions as being "terrible". They report feelings of pleasure in human connections, happiness and overall fulfilment.
The literature that pregnant women are given on prenatal testing distances itself from the eugenicist - or Nazi - history of efforts to rid society of disability. We’re told that prenatal screening is about choice. But how much of a choice do pregnant women really have? Canadian researchers report that women feel pressured by medical professionals to abort when a diagnosis of Down syndrome is made. And for those without an independent fortune, this pressure is exacerbated by a lack of government assistance.
As screening becomes more sophisticated, and capable of detecting a wider array of anomalies, we surely need more people with disabilities in policy debate. Has anyone asked them how they feel about technologies which ensure that the world has less people like them - or eventually none at all?
I once told Toby I was helping an academic with some research on the politics of aborting foetuses with disabilities. "But that’s ridiculous," he scoffed. "That’s like saying I shouldn’t have been born!" He laughed, but beneath it you could see the hurt, the unspeakable agony and outrage of being told that the world would have been better off without you.
This article first appeared on DailyLife.com.au.