"Eradicating Down's Syndrome" - A parent responds 


One of the reasons we came to Emmanuel in 2010 was because of the special needs ministry that has cared wonderfully for Alexander, our little boy with Down’s Syndrome (DS), and others with special needs. Rosemary and I marvel at the importance attached by the church to this ministry and the value placed on those with special needs.  It was therefore both fascinating and disturbing to see recent media coverage about a non-invasive test for Down’s Syndrome and how some say that it could lead to even more babies with Down’s Syndrome being terminated in early pregnancy.  This news followed soon after the media storm around Richard Dawkins responding to a woman on Twitter that it would be immoral not to abort a pregnancy if she knew that the baby had Down's syndrome

To be fair to the BBC, news coverage about the new test included interviews with parents of children with Down’s Syndrome, who affirmed that people with DS can lead fulfilling lives, can enrich the lives of those around them, and who warned against ignorance about the condition.  One mum commented pointedly, saying how upsetting it would be for a person with DS hearing talk on the news about ‘eradicating’ Down’s Syndrome. 

I confess that before having Alexander, I was pretty ignorant about DS in particular and disability in general; I found the physical features of DS off-putting.  I remember in the days of our infertility thanking God that at least we didn’t have a disabled child.  When we had the diagnosis of DS, I was so fearful that I wanted to terminate the pregnancy and through that experience I recognise more than ever what a tough decision it is to take.  Nine years later, through all the challenges, Rosemary and I feel better equipped to share some Christian perspectives on Richard Dawkins’ view, and news of this new blood test.

It’s important to remember the Bible’s assertion that humankind is made in the image of God (Genesis 1: 26-27); and I expect this means all humankind, whether they have a disability or not.  Clearly, Alexander’s learning difficulty raises lots of questions about how people like him can relate to God, for example on matters such as obedience, the ability to understand the Scriptures, and how his sin can be confessed.  So every week, we confess Alexander’s sin on his behalf, just as Job did for his children in Job 1:5.

Many of you tell us that Alexander enriches the church family and how he ‘gives something’ to you that is quite unique.  That has been our experience as parents; but more than that, it has given us the opportunity to model Jesus to him in ways we had never thought possible.  I remember after a talk to TnT about our experience, someone asked ‘what have you learned?’  I responded by saying that Alexander has taught me a level of compassion and agape love that I believe has made me more Christ-like, as demonstrated in my relationships with patients in my NHS work, and in the pastoral care that I occasionally provide.  Had we terminated, it would have thwarted that God-given opportunity to learn, grow and serve.  Don’t get me wrong – there is no rose-tinted thinking here, because caring for Alexander has been costly, difficult, and both our physical and mental health continue to suffer as we care for him.  I confess that it sticks in the throat to read that our grief in all kinds of trials have ‘come so that your faith….may be proved genuine and may result in praise, glory and honour when Jesus Christ is revealed’ (1 Peter 1: 6-7).  I feel like screaming!  But I have to acknowledge that this truth contradicts Dawkins’s limited raison d'être to ‘increase happiness and reduce suffering.’  How counter-cultural is the Gospel!

The moral philosopher Peter Singer seems to suggest that a person needs a certain intellectual capacity to be a ‘person’.  I sometimes wonder if atheists are more likely to hold a utilitarian view of humanity, valuing what people can do rather than their inherent value as human beings.  Scripture thankfully challenges Singer’s extreme view but also refreshingly challenges God’s followers to remember to value every person, with or without special needs, because we are all ‘fearfully and wonderfully made’ (Psalm 139:14).  the preceding verse, ‘you knit me together in my mother’s womb’ (Psalm 139: 13) causes us to consider if that is true of someone like Alexander, in spite of his chromosome disorder?  I have to conclude that this verse must be true of him, because that is what the Scripture says.

1 Corinthians 12: 3 declares that ‘no-one can say ‘Jesus is Lord’ except by the Holy Spirit.  Rosemary and I are seeing Alexander sign this to himself more and more.  How can someone with a severe learning difficulty do that?  Surely it’s the power of God, who not only can, but delights in reaching out to Alexander and others with disabilities, and have a place for them in His eternal kingdom.

Barry Jubraj, 02/07/2015