World Down Syndrome day: how much progress has really been made?

By: Madeleine Burt

One of the terrible paradoxes in our modern day exists with society’s treatment of those with Down’s syndrome. Whilst promising that we are a more accepting and inclusive society than ever before, those with conditions such as Down’s syndrome are marginalised from conception and often feel told that there is little place for them in society. 

With World Down Syndrome day, this past week has come a call to action for the year 2020 of “We decide” – attempting to insert the voice and opinion of those with Down’s syndrome into the conversations that take place regarding these people. The existence of such a campaign indicates that crucial voices are being ignored, and we are shamefully far from where we should be in breaking down ignorance and barriers. 

Life in the past few generations has seen a complete transformation for the lives of those with Down’s syndrome, in legislation and beyond. From the Equality Act of 2010 to educational integration and community integration, as well as huge progress made in science aiding the development of those with Down’s, positive steps have evidently been made. 

My Great Aunt, born in the 1950s with Down’s Syndrome, could have had a very different upbringing 50 years later with the resources now available, centres now open and attitudes now prevalent – she spent 40 years in a group home after leaving home age 4. In the 1990s, with the introduction of a big community care initiative, Hilary moved out of the home as the big institutions were closed.

Looking back now, with the complete change of life Hilary experienced in the community care, my family still wonders how her life could have been different had such initiatives existed when she was born.

With increased scientific knowledge around Down’s syndrome has come the ability to screen a baby for the condition and subsequently terminate the pregnancy

However, these positive steps have been partially corroded by a negative development that has run in correlation to such promising improvements. With increased scientific knowledge around Down’s syndrome has come the ability to screen a baby for the condition and subsequently terminate the pregnancy. Whilst this itself is not a negative development, it brings out general attitudes that a child with Down’s syndrome is not desirable, in a world supposedly promising to be more inclusive. 

Screening is followed by a diagnosis test that holds a 1 in 200 chance of miscarrying as a result of the test. An information gap already exists with society not being well enough informed about Down’s – and so a combination of lack of information, the test that is offered to mums-to-be, and more relaxed rules about abortion if the child has Down’s, often point towards suggesting to the mother a termination could be desired. 

Around 90% of women terminate their pregnancies if their baby is diagnosed as having Down’s syndrome

Around 90% of women terminate their pregnancies if their baby is diagnosed as having Down’s syndrome, and can do so up until birth. The inequality in this was recently pointed out by Heidi Crowter, who has the condition and spoke of the “deeply offensive” law that has made her feel from birth that her life is not as valid as that of other people. How valid can claims of equality for those with disabilities be when there are terms concerning when this equality will be exacted and when not? 

Further, the consumption society emerging around us focuses on fulfilment and satisfaction through the likes of social media, cosmetic surgery, and moves towards genetic modification, which offers little room for those who already feel marginalised.  A new ‘Radical Beauty Project’ by Zuzia Zawada photographs people with Down Syndrome, but with a stark message behind it – as creative director, David Vais, warns, “they’re endangered people”, who are still very little listened to, understood or made to feel accepted in an increasing hostile society to anyone who’s a little ‘different’. 

Iceland is a scary case – only 1 or 2 people a year are born there with Down’s syndrome with almost every mother seeking an abortion in a society that does not seem to accept those with the condition. Diversity and difference of whatever form should be celebrated and cherished, and the day that they are not becomes a day when society as a whole starts losing out. 

We must give back the voices of those with Down’s syndrome and listen to their valuable contribution to our society. Time is of the essence for society to finally become accepting and inclusive to every valuable member.

Image: Rich Johnson via Creative Commons

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