Today is World Down's Syndrome Day. It's a day to celebrate and show the world the talents of our loved ones with Down's Syndrome.
In 2017 however, March 21st has become a day of mourning. Down's Syndrome is becoming a death sentence.
The ongoing debate surrounding screening and abortion has become intense. As of 2018, the NHS will offer the "non-invasive prenatal test". This blood test gives expectant mothers supposedly a 99% indication of the Down’s Syndrome status of their baby.
I agree that women should have access to available information about their unborn child's health. Screening is not the problem. It’s the screening out that gives me shivers, and given the statistics there is no denying that the use has become eugenic.
Already in the UK, 90% of mothers terminate following diagnosis. In Denmark, the rate is 98%, with a government objective of zero Down's Syndrome births by 2020.
As Sally Philips mentioned in her BBC documentary last year, since the introduction of the blood test in Iceland, there has been a 100% termination rate. In China, the end of Down's Syndrome is predicted. Despite this shocking pattern, countries including the UK, the Netherlands, and France are in the process of expanding routine prenatal genetic screening into public healthcare.
Why then are we so proud to claim that the disabled have an equal dignity and value to the non-disabled? In the UK anyone can abort a child up to 24 weeks, but a child with Down's Syndrome can be aborted right up to birth. How on earth is this considered just, consistent and equal treatment?
Lord Shinkwin, in his recent Private Members Bill respectfully invites us to imagine the outcry if the same were applied to skin colour or sexual orientation. It would cause outrage. And rightly so!
The irony is that all of this focus on screening is happening while people with Down's Syndrome are achieving more than ever before. Years ago, they were housed in institutions. Today, they attend school, work, vote, and have meaningful relationships. Their life expectancy has increased dramatically, from 25 in 1983 to 60 today.
Preventing the birth of Down's Syndrome babies is big business. Each baby with Down's Syndrome screened brings huge financial profits to big pharma. The availability of this new test under routine prenatal care fosters a problematic mentality: these babies are better off dead. The tests were privately introduced in 2011. Ever since, funding for research into Down's Syndrome has decreased.
Indeed, illness is costly. A so-called "burden to society". But let us evaluate this price. Who are we to tag a value to a life? Accepting and caring for the most vulnerable is precisely the cost which society needs to pay to remain fully human.
Are we deliberately overlooking the fact that people with Down's Syndrome have human rights, too? Routine selection is blatantly in violation of international law. The 1968 WHO criteria states that population wide screening is only acceptable if a "treatment for patients with the disease" is available. The Down's Syndrome test does not cure anyone.
Nobody is perfect; diabetes, PCOS, asthma, cancer, freckles on our nose…you name it! It is only a matter of time before we identify the next targets for destruction in this huge new field of eugenics. Once we target and even kill for a certain physical or mental condition, there is no logical stopping point. Please take action on this issue and sign the petition at stopdiscriminatingdown.com
Alexandra Tompson is a legal analyst with ADF International