Progress, but the myth remains

In the meantime, in many countries, women increasingly find themselves under pressure to get rid of the foetus after a diagnostic test of amniocentesis or chorionic villi (CVS) sampling gives a definitive diagnosis of Down syndrome. Many women are put off testing due to the risk of miscarriage. But nonetheless, 90 percent of babies with DS are aborted in the UK, for example, under current legislation.

In Ireland, The Citizens’ Assembly, set up in 2016 to discuss issues such as its aging population, abortion and climate change, is discussing the possible repeal of the eighth amendment, which guarantees life to the unborn.

After voting in April a recommendation will go to the Houses of the Oireachtas to be debated.

If Ireland repeals the eighth amendment there will more than likely be an immediate decline in the number of people born with Down syndrome.

The possibility of wiping out an entire group of people has led to media messages in particular on Facebook where we now have regular features of young people with DS going about their lives with great success.

The issue raised by many is, quite simply, who is the judge of what constitutes a good or worthwhile life? As far as this relates to Down syndrome, we know from hard evidence that there is a wide spectrum of talent among those born with an extra 21st chromosome.

There are fashion models, actors and actresses, store workers and receptionists who all have DS. Children with DS attend ordinary schools throughout the developed world, sit state exams and learn to read and write. Many have phenomenal memories and a rare gift for caring for the elderly and in particular for people with dementia and Alzheimer’s. We have not even begun to tap into their worth and value to society.

Many commentators point to historical research that shows how valuable children with DS were to societies in past eras.

The Renaissance painter Fra Filippo Lippi, for example, included a child with DS in his Madonna Trivulzio and the 16th century Flemish Nativity painting, The Adoration of the Christ Child, includes an angel modelled on a child with DS beside the figure of Mary.

The 15th century Italian painter Andrea Mantegna also reportedly used a child with DS as a model for Christ in at least three of his paintings. Historians believe the child may have been his, or belonged to one of his patrons.

The inclusion of figures with DS suggests that society did not always share the sense of shame at the birth of a child with DS that we seem to have later imbibed.

Artists recognised the unique qualities of innocence, love and forgiveness that people with DS share with Christ.

Research into our own folklore suggests that the figure of the douen may have been invented because of a large number of children born with Down syndrome on a particular estate in Trinidad.

In keeping with many marginalised groups, children with DS in the past were abandoned, or institutionalised and left uneducated and were often not taught social skills. This is no longer so.

As a result we now see ordinary people with features that are different, working and living in society.

But the myths associated with this condition remain.

So what are the real issues? For the most part people with Down syndrome trust others. In Trinidad and Tobago it would be impossible for a young woman with DS to walk or to take a maxi-taxi without fear of molestation. But it is our social climate that allows no assurance of safety, not our children.

People with DS are often the butt of jokes because their features are recognisably different.

Certain parents even consider plastic surgery. However, having a distinctive look may be a protection.

It says there are things I may not be able to do, but this does not say that I cannot live an independent life and look after myself. I can also have a meaningful life and good friends and a loving family. At the end of the day how many of us can state with confidence that we have this much? Yes, it is highly unlikely that a person with DS will become an academic, a lawyer or a doctor or a professional of any kind. They also do not have the killer instinct needed to succeed in many corporate jobs. But not too many of our citizenry will end up in such p o s i t ions anyway and we do not as yet suggest that such potential “under”- achievers should be culled.