A world without Down Syndrome
The telling of our collective human story requires the inclusion and dynamic of subjectivity – of personal and often passionate views. Objectivity cannot be the only respected narrative if we want society to progress humanly. We also need to hear the benevolent bias of human beings living in constant closeness to people whom competitive societies might not value. At times we must lean far out over the bow to restore balance and avoid shipwreck! In her debut documentary ‘A World without Down syndrome’ (BBC Two, 5 October 2016), Sally Phillips does this very thing. This is my personal response.
I watched her documentary with all the raw enthusiasm of a fellow team member urging her to run with it, to push through, to open up the field. As the father of Amy (age 11) who has Down syndrome, I travelled every twist and turn with this mother of Olly (age 11) who has Down syndrome. Looming large were issues about genetic diversity, the intense and dominant individualisation of choice (to terminate a pregnancy), the nature and delivery of the information on which to base that choice, the potential impact of the new Non-Invasive Prenatal Test (NIPT) for the Down syndrome community and the desire for perfection. For me, as a father and a Christian, the big question (as Sally Phillips herself voiced) is what kind of society do we want and what kind of people will we tolerate living in that bespoke society?
People with Down syndrome are genetically different. The condition is not an illness (albeit there are associated health problems) so people do not suffer with Down syndrome. To exaggerate the equality and severity of suffering because of the condition per se would be misleading. Notably, the additional chromosome 21 in each cell does not produce identical people. Each person with Down syndrome will, like the rest of us, have strengths and weaknesses, good and bad health, their own personality, differing levels of ability and make their own distinct contribution to society. Appropriately supported people with Down syndrome can lead happy and fulfilling lives well into their 60s. They contribute to human genetic diversity on our planet. To imagine a world without Down syndrome would to imagine a world less diverse, more predictable – a world screened by the strong.
In British law, an indication of disability permits termination up to birth (removing the ‘normal’ ceiling of 24 weeks). The introduction of NIPT (based on quantitative or qualitative analysis of cfDNA in maternal blood) provides safer and more accurate testing to inform ‘reproductive choice’. It is anticipated that the numbers of people choosing to abort a child with Down syndrome will rise from 90% (currently) to 99%. With around 775 live births (UK) each year (representing the other 10%) an adjustment to 1% would be terrifying near ‘a world without Down syndrome’. Of course, this new testing merely improves the accuracy of medical information (reinforcing a neo-medical model of disability) and does nothing to enhance or guarantee the delivery of social, moral and theological information to holistically inform choice. As this new screening has particularly targeted Down syndrome it would seem to be a potential violation of human rights and of chromosomic discrimination. The intention is to screen out of existence people with Down syndrome.
This test is a small but expensive development within the extensive field of new genetics, leading some to ask, ‘Down syndrome today, who tomorrow?’ So, do we want a society without genetic diversity, a dominant ‘normality’ creating a totalitarian genetic future? What is the ideal? Who decides? Clearly the quest for human perfection is flawed because it requires the humanly imperfect to define what it is or, more accurately, who it is – unless, of course, there is a God who comes to our aid.
The arguments for termination cite potential suffering and severe health problems of the person to be born and the burden and cost of care (over fifty plus years) as major factors. However there is another story to be told. People with Down syndrome are dramatically re-writing the script. These self-advocates are asking us to see who they are now - to ditch the old perceptions, the old research and the old definitions - and to embrace the positive impact they can make on the quality of society now and in the future. ‘Look at our contribution’, they say,’ to the arts, education, sport and the social diversity of local communities’. Yet, that very society, in which they are beginning to flourish, is introducing more efficient ways of informing parental choice (the NIPT) with the potential outcome of reducing still further the number of people with Down syndrome who are permitted to live. ‘Informed choice’ requires correct information. What concerns me is the potential for elimination by ignorance and for conformity by reduced choice – making it not possible (or socially unthinkable) to give birth to a child with Down syndrome. As we are seeing in Iceland, people with Down syndrome would become a rarity, confined to medical textbooks and no longer seen within and contributing to our local communities.
People with Down syndrome have a prophetic role to play in society. They are individuals who vary in their capabilities and who resist easy stereotyping. Yet they have in common a positively different way of being in the world, of defining a good life, of relating to other humans, of measuring time. They bring to us bold insights into the true nature of our common and fragile humanity, of non-competitive living, of love, fun and acceptance of difference, of spiritual experience, of the dignity of interdependence, of experiencing our world without the constant tyranny of analysis, of measuring value in terms other than productivity and personal advancement.
To imagine a world without Down syndrome is to imagine a world built merely on strength with intolerance to weakness – and eventually, one would imagine, an increasing incapacity to feel and address the needs of others. Do we want a society in which progress is to need each other less? If that were so, then the aggressive march of intense individualisation and de-socialisation (if not de-humanisation) of the planet would continue unabated, with no counter-cultural restraints in the way. People with Down syndrome often transcend factionalism in many societies – I know my daughter brings people together - there is something powerful in her ability to bring people into the centre of what it is to be truly human. I guess, she lacks the skills of prejudice.
People with Down syndrome require support and that requirement helps to humanise society. The biblical mandate is that we (as Christians) are to care for the weak not eliminate them. Of course, there are many pressures on people with Down syndrome and their families. It is a demanding and often difficult life. Much is asked of parents, carers, faith communities, welfare services and government budgets but, as Sally Phillips says, the answer to such pressure is not termination. The answer is to respect people with Down syndrome and the families who love and want them. The answer is to channel resources into support in society (care, education, housing, employment) and so dignify the people who make us all richer within our shared humanity.
Sally Phillips put her head above the parapet and voiced another way! By doing so she has provoked serious and diverse comment. Most importantly, perhaps, people are talking about the things that really matter – who we are and who we are choosing to be as a society. Of course, the biblical mandate is not only to strengthen the weak but also to advance a different worldview on existing secular perspectives on humanity. For example, respecting every person as made in the image of God (Genesis 1.26-27, 5.1) and bringing very different perspectives (1 Corinthians 18-2.16) on weakness and strength, on foolishness and wisdom. The Cross is not foolishness but wisdom, not weakness but strength. The Cross divides the human race; it is ‘foolishness to those who are lost’, but to those ‘being saved’ it is the ‘power of God’. Jesus Christ, the perfect human being, is restrained and incapacitated on a wooden beam.
‘But God choose the foolish things of the world to shame the wise. He chose the weak things of the world to shame the strong. And God chose what the world thinks is not important – what the world hates and thinks is nothing. He choose these to destroy what the world thinks is important.’ (1 Corinthians 1.28)
Crucially, the Church is the prophetic voice of these divine perspectives, tasked with putting ‘another way’ into the frame. We must speak into, and if necessary confront, long-held secular perspectives that would devalue and de-humanise people. If we do not act, society will, by default, build the future solely on notions of human strength, intellectual capacity and economic productivity.
Part of our dilemma is, perhaps, that we too find difference and weakness difficult to embrace. The relative absence of people with Down syndrome and their families in many of our churches and/or lack of awareness, skill and confidence to facilitate appropriate inclusion and support for them and their families may be significant factors. We seem to remain novices. Yet those same churches and faith communities have the potential to offer our government and society exemplary places of inclusion, support, care, training and employment. The presence, voice and expertise of Christians in local communities could turn things around and provide support systems to honour these human lives, to enrich all of us and, crucially, to prevent the potential extinction of all people with Down syndrome. This is our time!
The Down syndrome community is indebted to the courage of Sally Phillips. She has dignified the debate with the eloquent and passionate subjectivity of a mother and an advocate. Put simply, a personal view matters. This is mine. To imagine a world without Down syndrome is to imagine no Amy. I cannot do that. Can you?
Dr J N Ian Dickson
Centre for Intellectual Disability Theology and Ministry
Belfast Bible College
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