What’s wrong with screening for disabilities?

In a recent article on the Daily Life, Alecia Simmonds looks at the problems of screening foetuses for disabilities. She makes a strong argument, and brings together a lot of the criticisms of disability screening. Most importantly, she briefly looks at the idea that making an informed decision on whether or not to have disabled child is not actually a choice with equal options. If society does not support one option, if life will be more difficult financially, if it will strain the relationship with your partner, if people will see your choice as a ‘tax burden’, if the majority will consider your choice foolish, then really, what choice do you really have?

But she also throws in a bit of hyperbole to her essay. In referring to a German study which found that 90% of women whose foetuses were diagnosed with Down Syndrome terminated the pregnancy, Alecia says “as a society we are on a nightmarish quest for biological perfection and crushing normality.”

I would consider a nightmarish quest for biological perfection to be the kind seen in Gattaca, where we choose our child’s eye colour, their height, their intellect, their athletic ability (which many of us already do, in choosing a mate. We don’t choose who we are attracted to, but surprisingly, it’s not the disfigured midgets who cant pass an IQ test or catch a ball that are getting all the dates). Choosing not to give birth to a child that will lead a significantly impaired lifestyle is hardly in the same category. These children may well lead happy lives, but they are not ignorant to the things they will miss out on in life. Choosing to bring them into a world where most will be deprived of many simple pleasures like steady work, independent travel, relationships or a family of their own, when they had the option not to, could almost be considered cruel.

Of course, saying this in public is always a dangerous thing to do. Alecia sums it up here:

“I once told Toby that 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.”

Because people think that if you are pro-disability screening, you are making a statement that disabled people are better off never having been born. That the world would be better off without them.

If disability screening was allowed, Toby may not have been born, correct. But let’s not forget that at the time he may have been aborted, he wouldn’t have been ‘Toby’. He would have been an unnamed zygote. Or a foetus. Which to many, many people, is not that dissimilar from any of the other sperms or eggs that are expelled during masturbation or menstruation. Just like the woman who chooses an abortion because it will interfere with her career, or she is unable to support a child, or it will interfere with her general lifestyle, Toby could have been terminated because the life he will lead will automatically put the woman, and the child itself, at a disadvantage. ‘Toby’ could instead, be the next ‘healthy’ foetus. The next sperm and egg to combine that will not enter the world immediately set up for a life of challenges and hurdles that will affect everyone around him.

It may be a societal problem that disabled people are not well enough supported, and it is a pity that they are not, but it is a fact. Most parents do not have the time and resources to adequately care for a disabled child.

I do not believe the world is better off without disabled people – in fact, I think the diversity makes the world a more colourful, wonderful place. Disabilities people make society more tolerant, more accepting and kinder. They teach all of us about perseverance and overcoming challenges and contribute to a society of humility and humbleness. Many people with disabilities are also capable of incredible feats – the Paralympics certainly proved that and there are countless examples of artists and geniuses who battled with disability.

But there should be no obligation to bring a disabled child into the world, nor should there be resistance against disability screening. Is it taking the easy route? Yes. But why shouldn’t we? Raising a child is hard enough as it is. Why should we be expected to accept the random chance that it will be one hundred-times harder? We may love them unconditionally. They may even be one of the lucky ones who can live close to a normal life. But aborting a foetus that will be born disabled causes no more harm than aborting one who will get in the way of your career. Choice allows us to be selfish. Not all people will be. We accepted it in the 1960s with birth control. Why not accept it now?


Criminal pregnancy

Abortion is a crime against society.

This is not philosophical or religious rambling. This is the law in NSW. In 2012. In a secular country. Where women have rights.

Under the Crimes Act NSW, terminating a pregnancy can technically land the woman and her doctor in jail for up to 10 years. This is irrespective of how far along the pregnancy is, be it four weeks, or 32.

Division 12, section 83 states:

“Whosoever unlawfully administers to any woman, whether with child or not, any drug or noxious thing, or unlawfully uses any instrument or other means, with intent in any such case to procure her miscarriage, shall be liable to imprisonment for ten years.”

And yet, abortions are still accessible, with more than 130,000 performed in Australia each year.

In ACT, there are no laws governing abortion. In Victoria, abortions are only illegal after 24 weeks, following legislation to decriminalise the procedure in 2008. But in NSW they are illegal from day one. The result is that every single woman has to go in to a clinic with a readymade defence against the law. And that defence is called necessity.

As examples, in the criminal system you can use necessity to get out of speeding fines (if you need to get home to help a grandparent having a heart attack) or trespassing on a building site (because you heard screaming). In NSW, a woman must prove that she needs to have an abortion for the sake of her mental, physical or social wellbeing.

Simply not wanting a child is not enough. Women must be asked why they need an abortion and their responses must be recorded. If you cannot prove that you need an abortion, it is illegal for the doctor to go ahead.

Largely the system isn’t too impeding for women seeking abortions since most people have no problem citing career, financial hardship or immaturity as a need. Abortions may be freely available, this is not a huge social problem, but it is unnecessary and shows a lack of political courage for any party in NSW to step up and rectify an outdated law.

Feminists fought hard for women’s bodies to be recognised as their own – they choose how to dress it and who to sleep with. And yet we still don’t have the freedom to choose whether we want a child. Abortion is still not recognised as a choice, we still need to justify our decisions on the basis of need.

As an example, if someone plants an acorn in your backyard that will turn into a huge oak tree (that will cost you thousands in fertiliser to care for it properly, will affect your plumbing systems, and ruin your favourite social activity of backyard cricket) , you do not have to justify why you do not ‘need’ that massive oak tree  once it has been planted. If you don’t want it, you can simply pick up the acorn and toss it aside. Why can’t we have the same freedom with our own bodies?

The NSW legislation needs to reflect that it is ok for a woman to simply not want a child. It is not a matter of need.

I cant imagine abortion ever being a simple decision. It is a fraught, complex, personal decision that should be made in consultation with a woman’s doctor and usually, her partner. But it should definitely not be a crime.

*In a future topic I will discuss the lack of men’s rights in reproductive law and as food for thought: in no jurisdiction is a woman required to tell her sexual partner of a pregnancy, or abortion.