Are people with Down’s syndrome truly valued?

General Synod of the Church of England met last week from Thursday to Saturday, and it was markedly less traumatic than some previous meetings. There were some challenging issues—the main ones for debate being the proposal for moving towards interchangeability of ministry with the Methodist Church, a report on safeguarding issues, and a motion on the value of people with Down’s Syndrome. But there was a lower prevalence of speeches aimed at emotional manipulation, and a willingness to actually engage with theological issues in the context of debate. Perhaps kicking things into the long grass is helpful if it means we get cross with each other over something other than sexuality…!

But I came away from the final debate with surprising feelings of anger and disappointment. The motion on Down’s Syndrome was prompted by the availability of non-invasive pre-natal testing (NIPT) for Down’s, which it is feared will lead to an increase in both the pressure and the practice of termination of a foetus on the basis of having Down’s Syndrome alone, moving us towards the situation in Iceland where termination is near 100%, and there are very few people with Down’s left in the country. The concern is not simply about official policy but about actual practice, which consistently appears to put pressure on parents. Sally Phillips, the comedian whose 11-year-old son Ollie has Down’s (pictured), talked at a lunch-time meeting about friends of hers who had been approached nine times with the possibility of termination during her pregnancy.

The motion for debate had several parts in it, moving from the Church’s view and concerns, through to a request to medical agencies to ensure that impartial information and support is offered to parents during the pregnancy.

That this Synod, valuing all human life equally and celebrating the advances in medical technology which help alleviate human suffering:

(a)affirm the dignity and full humanity of people born with Down’s syndrome;

(b)request dioceses, parishes and the NCIs to work to review their activities and the provisions they make for people with Down’s syndrome and their families, to ensure a real welcome for all;

(c)support the continued development of ante-natal care including access to information that new, safe screening techniques provide; and

(d)call on Her Majesty’s Government and relevant professional bodies to ensure that parents who have been told that their unborn child has Down’s syndrome will be given comprehensive, unbiased information with regard to this condition

It came with a very helpful background paper from Mark Sheard, as chair of the Mission and Public Affairs Council, and an excellent opening speech from James Newcombe, the Bishop of Carlisle. Within the debate, there were several proposals of amendment, and three of those sought to make the issue of abortion of those with Down’s Syndrome more explicit. James Newcombe resisted each of these, on two grounds: first, that the debate here was not one on the issues around abortion, but solely on the question of information relating to pre-natal testing; and secondly, that a statement which pressed the Church’s own position on abortion (‘which is clear, coherent, and pretty conservative’) would make it harder to ‘speak to’ non-Church bodies like the Government and the General Medical Council.

On the first point, James is right that the Church’s position is clear, and this was included in the briefing paper:

The Church of England has a clear and established policy with regard to abortion: ‘The Church of England combines strong opposition to abortion with a recognition that there can be – strictly limited – conditions under which it may be morally preferable to any available alternative’. ‘In the rare occasions when abortion is carried out beyond 24 weeks, ‘Serious foetal handicap’ should be interpreted strictly as applying to those conditions where survival is possible only for a very short period’. (para 34)

This refers to an earlier paper from the MPA in 2005 which was endorsed by Synod. But I found it very odd to suggest that make some reference in the motion to this issue in the briefing paper was in any way muddying the waters. As both the debate, the briefing paper, and the fringe meeting with Sally Phillips had made very clear, the concern about NIPT precisely arose from the possibility that it would lead to a higher rate of abortion—and how can you value a group of people that you are seeking to eliminate? Despite the language in much public debate, NIPT and abortion is not about ‘ridding the world of Down’s Syndrome’ (since it is not a disease) but eliminating people with Down’s Syndrome. As one parented commented on the previous post on this issue:

She is not a burden – can anyone predict if their children will need extra support in any area or if they will contract a disease? She is who she is and she is just as human as anyone else. I fear for the day I have to explain to her that many people don’t think she is equal or as valuable and, in fact, there is an active process in place to eliminate people like her.

And, again, the briefing paper made precisely this connection:

The place within society of people with Down’s syndrome and even their possible future existence are now under question, however, as a new form of prenatal screening begins to be rolled out this year within the NHS, with additional provision being offered by the private sector. Non-Invasive Prenatal Testing (NIPT) is not intrinsically problematic, but the manner in which it is introduced, understood and administered has the potential to lead to major reductions of Down’s syndrome live births. In countries such as Iceland and Denmark, which have almost universal screening and close to 100% termination rates1, there is a real possibility that people with Down’s syndrome will effectively disappear from their populations. With a post-screening abortion rate of 90% within the UK2, the introduction and potential widespread use of NIPT requires a timely debate on its possible consequences. (para 2)

On the second point, I had to ask myself why we are so timid in being clear about what we believe? Martyn Taylor’s proposed amendment was very modest, simply asking that the affirmation at point a. referring to people with Down’s Syndrome ‘before and after birth’. In doing this, Martyn was proposing that we simply use the language found in the United Nations Declaration of the Rights of a Child:

Whereas the child, by reason of his physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth… (in the Preamble).

James Newcombe’s objection here was that saying this would make it harder for Government and GMC to listen to the request made in the motion. But the request came in point d, not in point a. And it is difficult to see why aligning with the UN Declaration would appear to be so unpalatable. But there is a wider point which this hints at: in our discussions with other bodies, and in our making reasonable requests, why are we so shy at being open for our reasons for doing so? If we did make the Church attitude to abortion clear, and if that is at odds with the views of professional bodies, why would that disqualify our request? Do we have to look like these bodies before we can speak to them? Are they so closed to reasonable requests from people with different views, values and outlooks? And does the Church of England have to, chameleon-like, changes its colours to match its surroundings before speaking into a particular context? (Before anyone points it out, I know that chameleons don’t in fact do this.) American theologian Stanley Hauerwas urges that our main priority for living in a post-Christendom world should be to ditch our obsessions with relevance, and simply be the Church we are called to be. And we are not called to be chameleon.

On this issue, it might not in the end make much practical difference. But I am saddened that, in rejecting these amendments, we held back from saying the thing that I think most disabled people want to hear: that we not only value them, but we are prepared to confront those who would see them eliminated. If we cannot do that, can we really say that we value them without qualification?

In the chamber we had one of those moments that occur in Synod of risk-aversion and deference, and the resistance of James Newcombe to the amendments was translated into rejection of them. It was shame; it was a missed opportunity; and I think it indicates a weakness in our strategy of engagement with our culture. And I felt cross.

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25 thoughts on “Are people with Down’s syndrome truly valued?”

  1. Great article, I absolutely agree. Where is the evidence that the amendments would have had the effect feared? It seems to me more important to speak out on controversial points than where most of society already agrees, e.g. food waste.

  2. So important. My youngest grand daughter has Winter-Baraitser Syndrome. Very rare indeed (c 3-4 known cases in the UK) but at 5 yrs 6 mths her development is similar to a “normal” 3 year old. Tantrums and all. With regular fits and checks for other issues associated with the condition. She is still totally engaging loving and loveable. And above all a child made in the image of God.

  3. There has been some disquiet within the Down’s Syndrome community that (a) was an issue for debate at all. Predictably not helped by some of the media coverage! I believe this report and debate and other meetings at Synod are greatly to be welcomed. Implementing (b) is a really exciting opportunity.

    • Thanks Mary. It concerns me if the community affected by this should find any of it disquieting. I wonder whether we should have said ‘knowing the full value of’ in the preamble, and then had three points that follow from this…?

  4. Ian can you clarify for me does his mean that synod does not affirm the dignity and full humanity of unborn people with Down’s syndrome?
    And if so at what point in gestation do they affirm this – and is this the same as for those without Trisomy 21?
    Also wondered why it was tabled for the last morning when, if anything like BMA conferences, everyone is tired looking forward to leaving or even leaving earlier?

    • What it means is that, in this motion, we did not express a view one way or another. Given that we do have a view (as the briefing paper noted, affirmed previously) I found it baffling that we were not willing to simply write the wording of the motion in ways that reflected that.

  5. I agree with this – I’m always dismayed to see those of unfashionable, non-PC views concealing them in order to make themselves more acceptable to the current ruling class. But I also think that with the highly ideologically driven tenor of public life at the moment, in the age of twitter storms and social media lynchings, it is sadly understandable that a body would choose to avoid controversial assertions in order to gain themselves a hearing on their central points.

    Personally I find the idea of defending the unborn disabled without also defending the unborn generally a bit of an odd position, but I can see that it is appealing to some. I suppose you arrive at them in different ways – one from recognising the moral claims of the unborn (a highly contested area, sadly), the other from recognising the moral claims of the disabled (an uncontroversial area) and then recognising the threat to their existence of certain forms of disability from pre-natal termination. Also, they are hoping that parents (sorry, women – must use the approved terminology) who are otherwise wanting a baby will consider not rejecting a baby merely because it has some kind of disability, particularly Down’s syndrome. But it does seem odd to try to defend the unborn when they happen to be disabled but not as a general principle – after all, the same rationale – not wanting to bear the costs (time, money, stress) of raising a child/disabled child – frequently drives both.

    (Incidentally I was dismayed to see James Newcombe saying it is ‘not an attempt to tell women what to decide ‘ – reinforcing yet again the fundamental lie at the heart of the abortion debate, that the only morally relevant agent in the situation is the woman, when there is also an unborn human being and a father with moral interests in the situation.)

    • Yes, I agree with both of those points. But articulating our objection to the termination of the unborn with Down’s Syndrome seems likely to raise no opposition at all—it is an easy ethical win—so it is baffling that we side-stepped it.

    • There is also the need to consider that you can legally terminate the life of an unborn child with Down’s syndrome and other ‘serious’ disabilities up to term – 40 weeks. The definition of serious is flexible and context dependent. Thus there is already a law which discriminates against those unborn children with disability. I wasn’t at synod so don’t know the intricacies of what went on …..

  6. There are unspeakable medical staff and procedures in this connection. I still naturally get upset when I think of the unrepeatable thing a doctor said to my wife and me before our first child’s birth. When we had had 2 or 3 we got covert messages about contraception.

    The C of E message does not make sense, because they are saying how precious Downs children are (correct) while giving the perennial nonsensical message ‘We take a neutral stance on abortion’. Not very precious at all, then: Downs or no Downs.

  7. Thank you Ian. I felt that the second amendment that you mention was nuanced and spoke absolutely into the discrimination a disabled unborn child suffers compared to a so called ‘healthy’ unborn child in that the later is safeguarded after 24 weeks, but the disabled unborn child is not. If this is not saying that the disabled unborn child is valued less I don’t know what is. Though this was mentioned in passing its significance was not emphasised in the debate. Martyn Taylor’s amendment drew attention to this extraordinary fact and looked to equal protection after 24 weeks – thus avoiding the Bishop of Carlisle’s concern about avoiding a focus on abortion. I felt this was a missed opportunity.

  8. My daughter and her husband realised at the 12 week scan that there was something amiss – excess fluid at the back of the neck which never totally went down. My daughter was tested for Downs, and DNA was taken to check for Patau and Edwards. All negative. The latter 2 result in such awful deformities and serious life shortening issues they would have gone for termination. But all credit they would not have terminated for Down’s. Given the near certainty that something was less than perfect they were still offered termination but again without a near certain reason, such as Patau etc, they resisted what the experts seemed to be an assume would be their choice. It was clear from early in her life that Evie was a very slow developer. She was nearly 4 when a colleague of their geneticist looked at a photo and felt she had Winter-Baraitser syndrome and used the remaining DNA sample to test for it. He was correct. And at least she was cleared for special needs education before mainstream education found it could not cope. There are certainly many challenges now and ahead. Not least for their elder daughter (20 months older), and the high probability that she will never be able to lead a “normal” adult life – not enough cases to make a reliable estimate of whether she might outlive her parents. No surprise I share Ian’s concerns. And let us not lose sight of the fact that behind these motions, studies and debates, there are real parents out there , often under varied pressures, making life changing decisions. Not to mention the grandparents (like my wife and I) who will also have to be there for them whatever they decide.

  9. 20 years ago I was put under extreme pressure by numerous healthcare professionals to have antenatal testing which I consistently refused. In his exasperation my gynaecologist eventually raised his voice and demanded to know why I was being so intransigent when my baby was at higher ‘risk’of having DS because of my age. Quietly I responded that I sat before him in a wheelchair as a disabled woman myself and I was perturbed that he thought that the lives of people with disabilities had less value than other lives. The gulf between us was so large and a further explanation that my faith (and not just my life experience) also meant that I believed every life had equal value was just nonsensical to him. As it happens my baby was born without DS but is now a young adult grappling with acute leukaemia. If that genetic ‘defect’ had been detectable in utero should a termination have been available and thus left the world without her unique contribution and love. We rightly value and seek to save her life now but, interestingly, the chromosome abnormality involved in her leukaemia is the same as for DS.

  10. Eddie Arthur has an interesting take on this issue:

    There is a relation in this issue to the other issues which we have discussed here. Differences are real. It is perhaps precisely in these differences where we find our value. We cannot say to anyone, “I have no need of you”.

    While there are issues on which I would disagree with Giles Fraser, he did write some time ago an article in the Guardian related to assisted suicide, and the pressure under which people feel “not to be a burden.” He said that he wants, in a sense, to be a burden to others. It is precisely in the interdependency where we find our true humanity and not in our autonomous individuality.

  11. Ian, Thank you for your account of the proceedings. I too came away from the final debate with surprising feelings of anger and disappointment for the same reasons that you have mentioned.

    I was also fed up especially as the last two speakers made a point that Synod heard from anyone who had a direct experience with have someone in their family. I had actually submitted a request to speak (maiden speech) and stated that I would be speaking from experience as one of my daughters has Down’s Syndrome. I stood up at every available opportunity but without success.

    My daughter is now 30 years old and is fully valued in our church and community, I think it was the way we went about it. (We had some unkind word at the hospital because we did not want any test during pregnancy). Our priest at that time said she was ‘A gift from God of a special child to special parents.’

    I could say more but I will leave it there.

  12. My children are now 6 and 4, and when attending the early scans we were offered these ‘further scans’ to test for various conditions in advance of the birth and given information. My wife and I had agreed in advance that we weren’t going to pursue this, as we we in agreement that it wouldn’t influence our decision either way, even if the tests revealed something. I am saying this because my perception of the midwifery and medical teams was actually very positive, and in hindsight still is. I had been prepared to resist any pressure had it being forthcoming, but truthfully didn’t need to. We were not pressured into pursuing the tests when we declined them, and no one, to our memory, mentioned it again.

    I am saying this not to call into question the truthfulness of those who I am certain had the polar opposite experience, but because I am cautious of painting the vast numbers of medical staff, especially those working with parents, as under a directive to ‘aggressively’ pursue a certain outcome; the truth is a lot more nuanced than this.

  13. There is something comparatively perverse about the comments about this issue on the Thinking Anglicans blog.

    In response to the Day 3 GS reports, there are just seven comments, all related to whether the correct medical term for the condition is Down’s Syndrome or Down Syndrome.

    I despair at their heartless and shameless failure to engage with the significance and impact of the GS resolution: .

    And it’s they who call marriage traditionalists hateful!

  14. There is a minor and a major injustice. The major injustice is to kill children before they have the chance to be born. The minor is to discriminate in that process. The difference between the 2 is the difference between disputes (a) and (b):

    Major dispute (a) is between the missionary who protested with Malcolm Bradbury that Eating People Is Wrong and the cannibal who begged to differ, and…

    Minor dispute (b) is between the 2 cannibals who disputed whether all missionaries were for the chop or whether instead the healthier/younger/tougher (delete as appropriate) ought to be spared.

    Minor dispute (b) starts from the wrong premise, (a) being the far more central debate without which (b) would not even exist. However, (a) is the one that people always begin by saying ‘We are not debating that one today’ (and don’t hold your breath). A society can remain in denial or adolescence only for so long.

  15. Amount of babies that are aborted because they have Spina Bifida. The first option that is offered is normally a abortion as they paint a bleak picture of what the child live will be. There should be other option offers first as many people with SB are normal intelligence or above. It is said that around 10% of the population has the hidden form of SB but only find out when they have a back x-ray. I have the hidden form but I am the unlucky 1% that have complications due it affecting more than i vertibra in the spine.


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