A scientific/medical portrait of an individual with Down syndrome

I am grateful to Amy Julia Becker for the invitation to make a small, but I hope nonetheless useful contribution to this ongoing discussion. The question "Should Down syndrome be cured"? is certainly interesting and controversial. But I do wonder if it is actually the right question for us to ask. I'm not trying to avoid the question! I am just not sure that it makes as much sense as it might at first appear. Normally when we use the language of cure, we have in mind some kind of "black spot" in another person or in ourselves that we want to eradicate. So we talk about curing cancer, curing AIDS, eradicating typhoid, tuberculosis or the common cold. Here the language of cure seems to make sense. The particular disease that we have threatens our well-being and even our lives.

With Down syndrome it is more complicated. Down syndrome doesn't threaten our lives. Congenital heart conditions which at one time threatened the lives of people with Down syndrome can now effectively be dealt with by modern medicine. Likewise with other physical issues. Certainly Down syndrome offers a challenge to society's prioritising of intellectual capabilities over other important human attributes, which can make a person's life very difficult, but in and of itself it doesn't inevitably threaten a person's well-being. So what exactly does ‘cure' mean when it comes to people with Down syndrome? Is it quality of life that is the problem? Would curing Down syndrome improve the quality of life of the chromosomally challenged individual? Well, I guess that depends on what we mean by quality of life.

Jean Vanier, founder of the L'Arche communities for people with intellectual disabilities, offers an interesting little story that might help with this point:

I was sitting and there was a man who was like a lot of people, a bit glum. There was a knock on the door. And before I could say "Come in," Jean Claude walked in. Jean Claude technically would be Down syndrome. And Jean Claude shook my hand and laughed, and shook the hand of the other fellow and laughed, and went out laughing. And the man that had been in my office looked at me and said, 'Isn't it sad, children like that?' And I mean, what was sad was that he was totally blind. He didn't see that Jean Claude was happy.

My point is not to romanticize Down syndrome. Nevertheless, if Vanier's observation holds any truth at all, then the issue of quality of life may not be located in the person with Down syndrome, but within the community within which she lives. I suspect that most people with illnesses and diseases which require curing don't give the impression that they are happy just as they are. Jean Claude was certainly different, but was he ill and in need of cure?

The idea of curing Down syndrome seems to me to be rooted in a rather medicalized approach to disability. Social workers don't seek after a cure for Down syndrome; they seek to participate in the creation of just and fair societies within which people with Down syndrome can live well. Physiotherapists tend not to focus on "cures." Instead they use the language of rehabilitation which expresses a desire to enable the body of the individual with Down's Syndrome to avoid pain and discomfort and function in ways which maximise the life of the individual. Likewise the language of cure is not the primary mode of speech for speech therapists, befrienders, teachers, chaplains, family, friends etc. Now, we might want to cure cancer, but it seems that all of the folks that surround a person with Down syndrome perceive themselves not as seeking after cure, but as seeking after that which is best for the individual as they are. So it does seem to be that curing Down syndrome is solely a medical "problem."  But in what sense is Down syndrome similar to other medical problems such as cystitis, haemorrhoids or acne?  If Down's syndrome is an ailment that requires a cure, it is an unusual one.

A personal portrait of an individual (and her mother!) with Down syndrome

Maybe a better way to talk about the issues that the key question under discussion points towards is to begin the conversation by noticing two things, both of which raise different questions. Firstly, one of the things that the human genome project has shown us quite clearly is that at the deep level of genetics, we are all different. If that is the case, then difference is the norm for human beings. If that is so, we need to think deeply about why we might choose the language of ‘cure' in relation to our response to the presence of Down syndrome. Would it not be fruitful to focus on living with difference?

Secondly, a theological point. It is not inconsequential that the Bible does not have a term equivalent to our contemporary biomedical understanding of the nature of health, i.e. health as the absence of illness. The closest term we find is the word shalom which is used something like 250 times in the Old Testament. The basic meaning of the word shalom is ‘peace'.  The understanding of the word ‘peace' expressed in the Old Testament's usage of the word shalom has specific theological meaning and intention. The root meaning of the word shalom is wholeness, completeness and well-being. John Wilkinson puts it thus:

to be righteous in the Old Testament view is to conform to a norm, to be in right relationship.  In the case of [humans], this norm is the character of God, and this relationship is to God and his will.  Righteousness is fundamental to the Old Testament concept of health. A right relationship to God produces shalom (Isaiah 32:17).  Righteousness and shalom flourish together (Psalm 72:7; 85:10; Isaiah 48:18; Malachi 2:6).

If this is the case, then to be healthy is not the absence of certain attributes, not even chromosomes! To be healthy is to encounter the presence of God. Health is a relational concept which has nothing to do with our bodily shape, the number of our chromosomes or the sharpness of our minds. It has to do with our relationship with God. The most hedonistic, intellectually astute athlete can be ill and in need of healing (restoration to right relationship with God) and the most deeply impaired individuals can be healthy and indeed beautiful. If this is so, then the question is not how can people with Down syndrome be "cured," but how can they (like all human beings), be healed, that is, brought into right relationship with God and their communities? It may be the projection of our medicalised culture's expectations of beauty and wholeness onto the lives of people with Down syndrome which makes the question: should Down's Syndrome be cured? feel so apparently "obvious." However, what might be required in terms of curative action is not the adding of a chromosome but the renewing of our minds.

John Swinton is Professor in Practical Theology and Pastoral Care in the School of Divinity, Religious Studies and Philosophy at the University of Aberdeen and an honorary Professor of Nursing at the University's Centre for Advanced Studies in Nursing. He has a background in mental health nursing and healthcare chaplaincy and has researched and published extensively within the areas of ageing, dementia, mental health and illness, spirituality and human well-being and the theology and spirituality of disability. He is the Director of Aberdeen University's Centre for Spirituality, Health and Disability, and Co-Director of the University's Kairos Forum. His publications include: Dementia: Living in the Memories of God (2012); Spirituality in Mental Health Care: Rediscovering a "forgotten" dimension (2001); Living Gently in a Violent World: The Prophetic Witness of Weakness (2008) (With Stanley Hauerwas and Jean Vanier); Practical Theology and Qualitative Research Methods (2006) (With Dr. Harriet Mowat).