Downpride is a Dutch, grassroots parentgroup, advocating for the rights of people with Downsyndrome from conception from the vision that Downsyndrome is Different Not Less.
We believe that, under the false pretence of women’s choices, prenatal genetic technology for Downsyndrome as a routine Healthcare program is promoting the de-selection of fetuses with Downsyndrome (and other genetic variations) which will negatively affect their position in society. What is a ‘woman’s freedom to choose’ when society believes people with Downsyndrome are ‘unworthy’. Societal relations are probably the greatest decisive factor in a woman’s individual choice.
Downpride has appealed the decision by Dutch government to introduce the Nipt as a standard test for Downsyndrome and is actively seeking media attention for the prenatal discrimination that is hurting rights of women en persons with Downsyndrome.
We fight for genetic freedom! Please join us!
The following article details our position on women’s rights and prenatal screening:
Women should not be afraid of ‘Down syndrome’; the real danger lies in a society that ‘cares’ less and exerts more pressure on women to deliver the ‘perfect’ child.
Because genetic prenatal screening has been making headlines mainly in the context of increasing women’s choices, many forget to question whether the rapid development and accessibility of screening technology will in fact, advance women’s rights.
Individual experiences set aside, Down syndrome is NOT a grave condition that causes serious suffering. While Down syndrome can cause real problems in the development or health of a child, most issues can be corrected or treated successfully. Furthermore the average life-expectancy, IQ or possible restrictions caused by Down syndrome cannot be described as ‘serious’, according usual medical definitions. Besides these hopeful facts, studies report that most persons with Down syndrome (upto 99%) and their families are happy with their lives. Why then, are governments, increasingly introducing routine prenatal genetic screening for Down syndrome into their public healthcare systems?
A eugenic movement consisting of philosophers, biologists and other scientists that consider Down syndrome and other genetic variations ‘unworthy of life’ are appealing on a high (European) political and societal level for equal and unrestricted access to prenatal screening and (selective) abortion by calling it women’s rights. According Marcel Zuijderland, a Dutch philosopher and author of a book about ethical dilemma’s in prenatal screening, it is morally justified to ‘not start a life with Down syndrome, but to choose for a better start in life’. Richard Dawkins, British Author and Biologist, takes it even further by claiming women have ‘a moral responsibility to abort a child with Down syndrome’.
Whether you speak from a pro-choice or pro-life perspective, an abortion is a medical procedure causing deep physical, as well as psychological consequences, that should never be regarded a woman’s responsibility.
As a woman, the levity used by both gentlemen in discussing abortion of wanted pregnancies, deeply disturbs me. Their remarks reflect not only a contempt for life with Down syndrome but also a disrespect for women. Whether you speak from a pro-choice or pro-life perspective, an abortion is a medical procedure causing deep physical, as well as psychological consequences, that should never be regarded a woman’s responsibility. Norway has done significant research in recent years about depression and anxiety in women who have undergone selective abortion. Not surprisingly, research shows that many women, years later, still struggle with serious emotional problems.
Down syndrome is not ‘a choice’. It is a genetic variation that exists once in about 700 pregnancies. I did not ‘register’ for it, yet I became the mother of two (wonderful) children with Down syndrome. I find it objectionable to suggest it would have meant a ‘better start in life’, had I chosen abortion at the time. The question also remains if a woman will be able to become pregnant again and whether she will carry a genetically ‘perfect’ child.
Dawkins’ remarks created a storm of protests. According a 2013 article “Moving beyond Public Fear of Genetic Discrimination” by the Geneva Association for Risk & Insurance, fear within the larger public endangers the uptake of genetic screening. According Genevaas measurements should be taken to reduce fears. The pharmaceutical industry slickly markets genetic screening as a safe, non-invasive method to ‘reassure’ women who are worried about the health of their babies. With over 200 million pregnancies worldwide genetic screening has become big business. The biggest threat for unbridled profits are ethical and moral objections. In Denmark, the first European country to introduce routine screening for Down syndrome as a public healthcare program, lives with Down syndrome are reduced to ‘mistakes’ and births are (nearly) eliminated. More European countries are following Denmarks’ example.
Pharmaceutical giants developing tests are in the race to secure a piece of the European and Asian markets. In China, a country where the one-child-policy regularly leads to forced abortions, routine genetic screening will probably not advance women’s reproductive freedom. Why are we so willing to believe this will happen in Western society?
In the eighties the German radical-feminist Group ‘Rote Zora’ claimed ‘under the false pretence of women’s choices, genetic technology is promoting the de-selection of handicapped fetuses which will negatively affect their position in society’. What is a ‘woman’s freedom to choose’ when society believes handicapped people are ‘unworthy’. Societal relations are probably the greatest decisive factor in a woman’s individual choice.
I am a woman, not an incubator of ‘perfect’ descendants. I have a right to give birth to a child who is ‘different’ and whose ‘worth’ may not be expressed in economic achievements.
We have to fight the ideology that ‘special needs’ are a woman’s ‘individual choice’. We have to resist the fear that is cultivated by medical professionals, politicians and pharmaceutical industry, to give birth to an ‘imperfect’ child. Down syndrome is not a ‘scary condition’ that causes suffering. The real danger are voices that claim our children need to be tested before we can decide ‘to start life’. It lies in a society that ‘cares’ less and exerts more pressure in our wombs. I am not an incubator of ‘perfect’ descendants. I have a right to give birth to a child who is ‘different’ and whose ‘worth’ may not be expressed in economic achievements. I have a right to unconditional, unprejudiced love for my child.
THAT is my woman’s right!