Susan McNamara, a teacher, writer and Labour Party activist, says new screening for Down syndrome forces us to address a crucial ethical debate about what sort of a society we aspire to be.
Ninety per cent of unborn babies with Down syndrome in the UK are currently aborted. In 2018 the government will roll out its programme in the NHS for the screening of unborn babies for Down syndrome through non-invasive prenatal testing (NIPT). The condition is currently tested for by amniocentesis.
This new screening programme is a travesty for the existing Down syndrome community in Britain, and threatens the rights of people with genetic imperfections to exist. With the current abortion rate so high, screening has the long term potential to wipe out Down syndrome completely: a policy that is being spun out in the wider world through some perverse pursuit of perfection.
We have all endured the endless stories about pressure put on expectant mothers to abort babies with Down syndrome, and the ridiculously poor guidance and care that is given once diagnosis has been made. Perhaps one of the highest profile cases is Sally Phillips who recalls the doctor apologising and the nurse crying when her son Olly was born.
There can only be one reason for this screening, and it suggests that babies with Down syndrome, a genetic disorder not a disease, are less worthy of life than any other “normal” child. Unfortunately, expectant mothers of babies with Down syndrome are not given impartial advice. In some instances they are simply sent home with a leaflet about abortion. This ethos of care needs to be robustly and energetically questioned. Down syndrome babies have the right to life as much as any other baby.
My own son, Adam, was born with Down syndrome in 2015 and is a loving, effervescent, benign, life-affirming specimen of humanity. He is no less human than you or me. He has certain characteristics which are different due to an extra copy of chromosome 21, but he is not a “disease” to be eliminated. He has much to give.
Consequently, we must support the Down syndrome community, their families and friends, and the advocacy group Don’t Screen Us Out, through backing their Early Day Motion. We must call on Jeremy Hunt to delay implementation of screening until more ethical research and considerations are scrutinised, including the Convention on the Rights of Persons with Disabilities (CRPD), ensuring that the care given to expectant mothers of children with Down syndrome is sound, impartial and appropriate.
Perhaps most importantly, however, we must examine our conscience as to what kind of human beings we are, and what kind of society we wish to live in: a society where our strengths are characterised by a rainbow of unique, exciting, individual gifts, and where we find stability and strength in our diversity, or a banal world where we wish only to be clones of one another; a place where sanitised eugenics looms terrifyingly on the horizon. This argument challenges the very essence of humanity, and it is abhorrent to suggest anything but the former is acceptable.
Disabled lives matter too.