“If I had willfully birthed a child with a ‘hopeless life’?”
In a blog I write about my daughters who both have Down syndrome, and how our lives are not so different. Mostly however, I try to alert society about the devastating effects that prenatal screening has on our lives. Responses by visitors are usually positive but not so the latest remark by 'Henk'. I'll spare you his remark.
I ignored Henk of course. However I cannot ignore the increase in frequency of such hatemail. Others notice it too. Kees from the Netherlands is 73 years old and has cerebral palsy all his life. He only now suffers from bullying. By children no less. A father on vacation with his disabled daughter, was told in public: “You’re in my way, I don’t want to have to look at you. I’m on vacation too.” A mother was approached “if I willfully birthed a child with a ‘hopeless life’”, and “that I wasn’t entitled to receive publicly funded support and care.”
Prenatal selection reflects low status of disabled
The ease and routine with which screening (commonly called ‘Mong-test’ in Denmark) and selection is offered to all pregnant woman contributes to the idea that the lives of people with disabilities are not valued. The UK, Belgium and the Netherlands have abortion rates higher than 90% if Down syndrome is detected. France and Denmark experience terminations close to 100%. These alarming numbers reflect the low status of people with Down syndrome in society.
The Dutch Minister of Health said in a debate about her decision to offer NIPT to all women: “If freedom of choice results in a situation that nearly no children with Down syndrome are born, we should accept that”.
Several groups including Downpride and Saving Down syndrome filed an appeal against her decision to implement Non-Invasive Prenatal Testing (NIPT) to prevent births affected by Down syndrome. We received a formal response which stated that screening and resulting actions are 'individual choices', therefore we (advocacy and parents organizations) are not affected by their National screening program. But we ARE affected.
In a world where diversity is celebrated, Down syndrome is eliminated.
While the government protects other groups from selection, Down syndrome is singled out as a ‘choice’. But ‘choosing Down syndrome' is just as unrealistic as choosing your child’s colour or gender. There is no choice in the matter. What they actually say is that women should have the right to abort their 'hitherto wanted' child because Down syndrome may bring extra financial, social or emotional needs.
By investing in their deliberate reduction, the government places the ‘problem’ with this group of people rather than society’s way of dealing with people who are different. This inevitably affects knowledge and resources for people with Down syndrome, and teaches others that lives with Down syndrome are unworthy.
Selective abortion: The real war on disabled
The United Nations calls “Gender-Biased Sex Selection An Extreme Form And Manifestation Of Gender Discrimination And Inequality Against Women”. Several countries have legally banned sex-selection.
The UNFPA (United Nations Population Fund) reports that sex-selection is a threat to women’s lives and human rights. It contributes to increasing violence against women....
“The roots of violence against women lie in the pervasive systems of inequality”, says Unicef.
And there you have it: violence against women is rooted in prenatal selection, an extreme form of inequality.
People's attitudes reflect their culture. People with Down syndrome have only had access to inclusive education in the last few decades. So it's not surprising that older folks often ask self-advocate Charlie who lives in the UK: 'Can I help you find your mom?'. As an independent 21-year old woman, she thinks this is both hilarious and humiliating. However, she's more worried about the increasingly disgusted looks and name-calling she gets from peers. This young generation has grown up in a culture where Down syndrome is described as a ‘risk to pregnant women’: A 'serious anomaly' that can easily be erased through abortion.
Charlie recently spoke to a group who believe it’s a woman’s right to abort for Down syndrome.
“Why don't YOU 46 chromosomers walk in OUR shoes. I get spat on by boys on public transport, called a mong and a retard. People talk to me like I'm four years old. I'm twenty-one! All the NIPT does is encourage the idea that WE are mistakes who shouldn't be here. It can check for 100's of things but it's being used to screen out people like me.”
The flagship ideas of those who consider Down syndrome a ‘choice’ are education, information and funding. They believe these are the key elements to improving the status of disabled people in society and the selective abortion rates. Whilst important, these factors cannot reverse a trend of social stigmatization. The UNFPA concludes that prenatal selection “occurs MORE in prosperous urban areas and among educated people than among rural poor families with less schooling.”
Blackbook Down registers
After revealing an alarming increase in discrimination experienced by Dutch families I am involved in an International project entitled ‘Blackbook Downs’: a book filled with testimonies, like Charlie's, of discrimination and violence, hate-crime if you like, committed against people with Down syndrome. Families also tell stories of coercion to screen or abort. Women tell how partners threatened to leave if they didn't abort.
Multiple reports by governments and the United Nations have proven that discrimination and violence are rooted in prenatal selection. So unless you support violence, by pretending the mass elimination of children with Down syndrome is a sign of 'freedom' or 'choice', you perpetuate a worsening system of inequality.
Henk, you are free to hold an opinion about my children and their cohort, but we live in a world where states have to protect us from discrimination and acts of violence. UN reports point out this should be achieved at the roots: by banning prenatal selection.
Renate Lindeman is mother of two wonderful children with Down syndrome. She is a spokesperson for Downpride, team member of Saving Down syndrome and #StopDiscriminatingDown: a campaign to alert the UN about governments who facilitate the progressive elimination of the Down syndrome community.
Please sign the petition to urge the United Nations to remind countries of their obligation to protect the inherent humanity and dignity of all human beings.