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.

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11 thoughts on “Unworthy of life?

  1. Beautiful piece Susan agree who.heartedly. Worth remembering that large sections of the British Left in 30s / 40s were strongly in favour of eugenics – UK was saved going down the scandi route by a combination of liberals and religious people.

  2. “disabled lives matter too”.
    That is really all that needs to be said, but I will add a little from my perspective.
    I had two children( now well grown up). Both healthy in every way. If they had had any disability, they would have been treasured.
    But I am glad they had no extra burden to carry through this life, which is difficult enough as it is. That is selfish I know, but not for those who have that extra load to bear. THEY would prefer to be as the rest of us are.
    My brother-in-law has a type of early onset dementia, which is genetic( his father probably had it, and his brothers certainly have it). He is loved as much as before, but that disease has ruined the golden years my sister and her husband might have expected after a life time of work, not to mention THEIR children.

  3. Susan you really have got me thinking. Years ago during the late nineties early 200s I was the attendant in a football pavilion that had a hall. We had a pensioners lunch club and a club for disabled adults.
    Down Syndrome people were in every day . They played a full part in the running of the clubs took pride in doing their dishes drank all our tea etc . Brian was a great Celtic supporter me a Rangers supporter so you can imagine how that conversation went every day all day.
    Their key worker told me about the problems they had experienced in their lives name calling by ignorant people .
    Well Brian and Mary and Campbell were my friends . They enriched my life . I still miss them . Good luck Susan
    I will think of them all fondly tonight.
    Brian wherever you are up the Gers Celtic are rubbish . The reply Celtic are world champions Rangers are rubbish.
    It was my honour to know them

  4. An excellent and passionate piece. It is scary that babies with DS are in such peril because of their ‘imperfection’. Reminds me of the Nazi eugenics programme: wipe out the weakest or most vulnerable in our society. My uncle had DS and was, without a doubt, the happiest human being I have ever met. Would he be aborted today? Would he not matter? When I was pregnant a couple of years ago, their was indeed massive pressure from the NHS for us to undertake invasive testing. No matter how often or how strongly we refused, saying we would keep our child no matter what, the midwife still wrote “undecided” in my notes. As a society, should we not be investing in research into the disorder and in resources to help people with DS and their families to achieve their full potential, enjoy life and contribute to society?

  5. A very well written and insightful article. Couldn’t agree with your sentiments more.

  6. Susan after I read your blog I am on a ill health retirement. Oxygen etc. I remembered my 3 amigos When I worked in the pavilion . No matter what our worries were those guys brightened our lives up.
    I don’t know how many of my fellow attendants and line managers I had to rescue from cuddles.
    What are people thinking of when they come up with the stuff you write about.
    I don’t know what the party policy is on this but I will ask next week.
    Good luck Susan and I hope you blog again to let us know what happens

    1. Thanks David for comments. Pretty much sums up my life with my child. Enrichment galore!

  7. Is aborting an unborn baby with Down’s Syndrome any worse than aborting an unborn baby without Down’s Syndrome? To me they are both equally abhorrent.

  8. heartfelt piece. Genuinely don’t know how I feel about it. One to wrestle with.

  9. Susan what have you done to me Answer you made me think . I am 62 and was nearly in tears when I read your blog .Its the most important blog I have seen on Labour Hame . Keep us updated on what is happening please

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