Valuing People With Down Syndrome

Monday 19th February 2018 Jean Antoine-Dunne

THE GENERAL Synod of the Church of England has voted unanimously on a motion put forward by the Bishop of Carlisle that people with Down syndrome should be valued.

The motion also called for the provision of “full information” to parents who had been told that their child would have Down syndrome.

This would include information about support systems and the prospects for those with Down syndrome. This information would be given without bias for any particular outcome.

We don’t want Down syndrome to be presented automatically as “bad news” says a spokesperson for the bishops. New non-invasive prenatal tests now make it more likely that the number of foetuses diagnosed with Down syndrome who will be aborted will rise to 100 per cent. This is due to the fact that new non-invasive testing (NIPT) has become available. Previously some women shied away from invasive prenatal testing because of the risk of miscarriage. NIPT is a blood test that is used for expectant mothers and checks specifically for “traces of chromosomal syndromes.”

Why is such a motion necessary in this day when we talk so much about respecting difference?

One reason is that Down syndrome has become pivotal to the whole debate about abortion.

One of the big issues debated in Ireland ahead of the referendum on abortion due to be held in May is that prenatal testing specifically targets conditions like Down syndrome.

So there is a likelihood that if this referendum to repeal the eighth amendment of the constitution, which gives equal right to life to the unborn child and the mother, is passed and abortion is allowed up to three months into pregnancy, there will be very few children born with Down syndrome in the coming years.

For those with Down syndrome this amounts to genetic cleansing.

Few in this debate seem to realise that people with Down syndrome read newspapers, look at television, and read and write. Can you imagine if you as an individual had to listen over and over again to government ministers, activists and journalists discussing whether you should be alive? Imagine if society had told black women that due to the fact that they were not as intelligent as whites or that they were lazy and devil worshippers and had a different colour and facial features, that they were free not to bring any more black babies into the world.

After all, once the slave trade was abolished and slavery on its way to extinction, in the colonies at least, what value would black or coloured people be seen to have? Given the stereotypes abounding about people of colour, then their demise could be seen (and in some places was) to be a service to society as a whole.

Who knows the value of a person with Down syndrome? Tradition has it that in many societies they were deemed angels. So they were valued in and for themselves as is evident in paintings throughout the ages. That they are no longer so, says much about modern times and the post-industrial era. Societies around the world apparently have no time or place for those who do not fit into categories of material or use value.

The biggest challenge facing any Down syndrome organisation, whether it is the DS Family Network, DS International or a local group anywhere, is something called “awareness”. This centres specifically on making the public and those who are ignorant of these truths aware that people with Down syndrome are people; that they actually are intelligent people, that they may appear to be very different because their features are different, but that they work and contribute to their families and society. People with Down syndrome actually bring something extra to human life, which in our world of crazy greed is becoming increasingly valuable. People with Down syndrome often have high emotional intelligence and understand the moods of others. Young and old seem to sense goodness. This is not a myth. People with Down syndrome are also incredibly good with elderly people and with small children and have an empathy with those who have conditions such as dementia and Alzheimer’s.

Recent studies have shown that people with Down syndrome contribute to the well being of their siblings and families.

When asked if they regretted having a child with Down syndrome, the majority of parents said a resounding, “No.”

We might hire people with Down syndrome to sit and chat with the elderly who are often lonely. There are many jobs that I can think of — and people with Down syndrome work and work efficiently. Maybe we should start to think of Down syndrome in our terms, that is, in terms of their use value.

That might make all the difference.

Valuing People With Down Syndrome by Jean Antoine–Dunne