Earlier this month, the disability-led stage production,”You Know We Belong Together”, was a hit at the Perth Festival. Julia Hales, an Australian woman with Down syndrome, co-created and starred in the show, which was “an uplifting tale of love, relationships, acceptance and belonging”.
Then, the student-led university group LifeChoice Australia ran their ‘Nothing Down About It’ campaign. The campaign seeks to promote the equal dignity and worth of children with Down syndrome and to raise awareness about the 93 percent of pregnancies that end in abortion in Australia when a baby is given a Down syndrome diagnosis.
To celebrate World Down Syndrome Day, fifty mums from all over England released a ‘Carpool Karaoke’ video featuring themselves and their children singing along to Christina Perri’s song ‘A Thousand Years’. The mums “got together to show the world just how ordinary and fun life with the condition is and how they #wouldntchangeathing”. The video has since gone viral attracting millions of views on Facebook.
T21 Mums Australia also released their own video celebrating their children, set to the hit ‘This is Me’ from the inspirational musical film,”The Greatest Showman”. They ask that the world sees their children for who they are: “A child WITH a diagnosis. Not a diagnosis that defines a child.”
Actress Sally Phillips whose 8-year-old son Olly has Down syndrome, has been advocating for inclusive education for children with additional needs based on the success of the Finnish education system. She notes that this is important not only for the inclusivity of children with disabilities such as Down syndrome, but also for other children who can learn from them so many important lessons about diversity, acceptance, kindness and compassion.
These are just a handful of positive, uplifting examples recognising and celebrating the lives, dignity and achievements of people with Down syndrome.
An obsession with perfection
Such examples may give the impression that there has never been a more inclusive, compassionate, exciting time to be alive for a person with Down Syndrome. Taking into account the historical institutionalisation and mistreatment of persons with Down syndrome, in many ways, this is true.
However, there is regrettably also a logical disconnect in our society when it comes to celebrating love, inclusion, diversity, human rights, and the strength of the human spirit on the one hand, and an obsession with perfection, control, choice, abortion rights and avoiding suffering on the other.
Take the recent article by Washington Post columnist Ruth Marcus, saying she would have aborted her child if he or she had Down syndrome and that “women need that right”. Marcus admitted that there are “creepy, eugenic aspects” to prenatal testing technology, while vigorously defending the right to choose which lives are unworthy and unwanted based on characteristics such as intellectual capacity. The piece received well-deserved backlash for devaluing and dehumanising the lives of children with Down syndrome.
The article was spurred by recent efforts in several American States to protect children with Down syndrome from being discriminated against by abortion laws. The outrage against such efforts by commentators including Marcus is saddening.
Then there are countries like Iceland which have been celebrating nearly “eradicating Down syndrome”. In other words, they are nearing a 100% elimination rate for aborting every child who is diagnosed with the disability. As highlighted by the LifeChoice campaign, the rate is about 93% in Australia.
The rate of children with Down syndrome being aborted in Australia is projected to increase even further owing to a controversial new prenatal test – Non-invasive Prenatal Testing (NIPT). The test is touted as being less invasive and more accurate, making targeting the Down syndrome community even more “effective”.
The eugenic nature of pre-natal screening and abortion for children with Down syndrome was addressed by Charlotte Fien, a prominent human rights speaker with Down syndrome, at an event co-organised by the Jerome Lejeune Foundation at the United Nations last week. Fien said that a perfect family and society are not possible:
“There is no such thing as perfection. You can try to kill off everyone with Down syndrome by using abortion, but you won’t be any closer to a perfect society. You will just be closer to a cruel, heartless one, in my opinion.”
The pressure on women to abort children with Down syndrome
Stories of mothers being pressured to abort their children with Down syndrome are also tragically becoming more and more common – or perhaps such mothers are simply becoming more emboldened to speak out in a society which has promised love and acceptance to them and their children.
On World Down syndrome Day, one Perth mother shared the beautiful story of her daughter Lily. Despite the assumption by one of her doctors that she would abort Lily and simply “try again for a ‘normal one’, the mother kept her “little bundle of joy”. She writes:
“I think medical professionals in particular need to be so careful about their language and assumptions when it comes to talking about babies with Down syndrome. I cannot fathom my life without my Lily. I still get upset thinking about the doctor trying to organise my termination…Life with Lily has been so unbelievably rewarding. She really does live in the moment and what you see is what you get. In a way, it’s her who’s teaching me. And I wouldn’t have it any other way.”
There are also countless stories of women who have not been given accurate information about the diagnosis, including information about available support, or worse, are given skewed, inaccurate, out-of-date information.
Earlier, Macleay mother Claire Martin called for access to accurate information and pre-natal support for women whose babies are diagnosed with Down syndrome. After her son Xavier’s diagnosis, Ms Martin struggled to find information and support and was persistently urged to abort at every medical appointment. She was told that her husband would leave her, that she would lose her job, and that the baby would have a poor quality of life as well as ruining the quality of life of her existing children. She writes:
“Here we are 18 months later and I wouldn’t have him any other way. I wouldn’t change him at all. I won’t lie, we have had extra medical appointments and we have had a few more health problems than a typical child would but not a single one of them makes me go ‘oh he’s got such a poor quality of life’. It has made his siblings’ lives better. He’s the glue that holds the family together.”
In fact, a study published in the American Journal of Medical Genetics, showed that most people with Down syndrome live happy and fulfilling lives. What’s more, two surveys published in the same journal showed that the vast majority of parents and siblings of Down syndrome children cherished their relationships with them.
Down syndrome discrimination is a feminist issue
In light of all this, why is discrimination against children with Down syndrome via pre-natal screening and abortion a feminist issue? Here are seven reasons:
Women are being persistently pressured to abort children who receive a Down syndrome diagnosis. They are encouraged by medical professionals, family, friends and society-at-large to “choose” to abort a child with Down syndrome. But what kind of “choice” does a woman have, when abortion is the only option presented, and when it is presented in such a coercive, frightening manner?
Women are under a constant pressure to be perfect: to have perfect bodies, perfect careers, and now to have perfect children. Aborting a child with Down syndrome has become a societal expectation, and in some circles, is considered a moral obligation. As with society’s other unrealistic standards of perfection, such expectations are damaging for women.
Women are not being told the truth about Down syndrome. Without accurate information, including information about pre-natal and post-natal support, women are being misled and scared by medical professionals, and are ultimately being prevented from giving fully informed consent when it comes to having an abortion based on a Down syndrome diagnosis.
Women are by-and-large the ones who care for and who need support to raise children with disabilities, including those with Down syndrome. This is not to say that men do not, or should not, help in raising these children, but the reality when it comes to child-bearing and child-raising is that women often assume a greater responsibility. Women are therefore the ones who rely most on support from family, friends, the government and their communities. Such support is dependent on attitudes that are compassionate and inclusive of their children, not discriminatory.
Women can suffer both physical and psychological harm as a result of abortion. Performing abortions for the purpose of terminating a child with a Down syndrome diagnosis, with no medical benefit to the woman, unnecessarily puts her health at risk (and is clearly fatal for the child).
Women have faced discrimination throughout history and continue to do so today. A modern example is the objectification and dehumanisation of women through practices such as sex-trafficking and pornography. Women in particular can therefore understand the importance of defending others from discrimination and dehumanisation, such as when children are deemed unfit to live owing to a disability (the same logic could also be applied to unborn children in general). Mothers of children with Down syndrome, whether born or unborn, also face discrimination themselves when others criticise and admonish them for keeping their children.
Women are incredible. This includes girls and women with Down syndrome, as well as all the mothers who unconditionally love their beautiful children and who strive for a society that truly values diversity and inclusion. Children with Down syndrome are a gift to their families and society, as are their mothers (and families) who love them. We should celebrate and support all women and their children, whether on World Down Syndrome Day, or any other.
Commentators like Marcus argue that “women need the right” to abort a child with Down syndrome. However, what women, their children, and the Down syndrome community really need, is accurate information and support, compassion, and for society to stop imposing harmful and discriminatory standards of perfection.
Rachael Wong is the Managing Director at Women’s Forum Australia.