General Synod: debate on valuing people with Down’s syndrome

16 February 2018

A Down’s syndrome prognosis ‘is not bad news’ Synod hears

Geoff Crawford/Church Times

Synod members applaud the Revd Rachel Wilson after her speech in the Down’s syndrome debate

Synod members applaud the Revd Rachel Wilson after her speech in the Down’s syndrome debate

THE Synod has put out a clear message affirming the value of people with Down’s syndrome and seeking to ensure that parents have full information about the current prospects for unborn children whom prenatal tests identify as having the syndrome.

Earlier in the day, the Archbishop of Canterbury had told Synod members that it was important to have a full chamber for the debate.

Introducing the debate, the Bishop of Carlisle, the Rt Revd James Newcome, the lead bishop on health and social care, emphasised that it was not about the ethics of abortion. The Church’s position on this “contentious topic” was “both straightforward and nuanced; principled and compassionate”. Although the motion had been partly prompted by a concern that the abortion rate for those diagnosed with Down’s syndrome could increase to nearly 100 per cent, “the rights and wrongs of abortion itself are not the purpose of our discussion.”

The debate was also not a “regressive attack on medical discoveries and advances”. It was “quite the opposite: we welcome NIPT [Non-Invasive Pre-natal Testing] as a useful, non-invasive procedure which will protect many women in the so-called ‘high-risk’ category from invasive procedures such as amniocentesis, with its associated danger of miscarriage.”

Finally, it was not “an attempt to tell women what they should do when faced with a desperately difficult personal decision”. The motion was “not designed to pre-judge the response of individuals”.

The debate was, instead, “an affirmation of one of the most important Christian doctrines: that is, our belief that every human being is made in the image of God”, and “a call for love and practical assistance”. The Department of Mission and Public Affairs was “fully committed” to following it up, to facilitate greater inclusion of people with Down’s syndrome in Church and society.

The motion was also a demand for “really comprehensive, unbiased information and counselling. . . We don’t want Down’s syndrome to be automatically presented as ‘bad news’”; and a reminder of the “huge advances” made with regard to those who have Down’s syndrome.

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“We are concerned that not everyone — and I include medical staff — may be aware of the amazing progress that has been made.”

The Bishop spoke of the “contemporary emphasis on independence as an ultimate value”, and the motion’s celebration of the “ideal of interdependence”. He drew attention to “the inherent contradiction between a secular celebration of diversity and the unintended consequence of getting rid of anything which is inconvenient or uncomfortable”, and also to “an inability to face, or cope with, suffering”.

He concluded: “People with Down’s syndrome are complete human beings, made in the image of God, deserving full inclusion in both Church and society. It is imperative that every step is taken to ensure that they are welcomed, celebrated, and treated with dignity and respect.”

The Revd Dr Mark Bratton (Coventry) approved of the “well-worded” motion. The Synod was right to be concerned about the eugenic impacts of new testing. But there were two rationales behind the motion: the right of a woman or couple to make a choice, and the public-health rationale to reduce the incidence of foetal abnormality. This public rationale undermined the first by creating a clinical situation in which women felt pressured to conduct tests, or endure social stigmas.

This was, Dr Bratton said, “objectionable on moral grounds”, and that was the principal concern underlying the motion. By affirming the value of people with Down’s, the Church could “identify, expose, and expunge the public ethic that we are only human if we have a healthy body”.

It had been said that it took two to make a child and a village to raise one, Isabel Adcock (Chelmsford) said. She lives in a village where children are watched over, and she has been grateful for that support. There are two people with Down’s in the village, and everyone watches over them, including the churches. “But we know that they and we are lucky. Others do not live in community,” she said.

Her fourth child had been diagnosed with a chromosomal anomaly, and had died five days after his birth. “My fifth child often complained he did not know his brother, and many in the village were affected by what happened. . .

“We need to build loving communities that are non-judgemental and will support those affected, and be looked after every day, not just on Sundays.”

The Archbishop of York, Dr Sentamu, expressed his involvement with, and support of, the NHS sickle-cell screening programme. “Every baby is immediately screened; so there is no discrimination,” he said. Parents could, therefore, make informed choices. If this had been done for sickle-cell anaemia, it should be done — “of the same standard, care, quality, and compassion” — for Down’s syndrome.

Testing took away ignorance, he said: “When you don’t know, you can be so frightened and petrified. This motion puts love where love isn’t, and allows parents to make informed choices.”

Dr Sentamu is a godfather to a Down’s-syndrome child, whom he raised after the boy’s mother died in childbirth and the father took his own life. His godson, Jack, was delightful, Dr Sentamu said, but required care and compassion. “That is what this Synod is about. He makes me feel that this is the sort of place I want to be.”

The Revd Rachel Wilson (Rochester), a wheelchair-user, was applauded when she told the Synod: “Being born with a disability is not a disaster. I know myself to be wonderfully made in the image of God.” The Synod must realise that that moment of realisation was transformative. “I no longer had to fall short on the world’s expectations: if it was good enough for God, it was OK for me.

“Make no mistake: my medical record is a catalogue of disaster; it is not untrue, but bears no relation to me. . . I was blessed with parents who saw fit to completely ignore what the doctors told them. We do a dangerous and disingenuous thing if we imagine for the worst what their lives are like.”

Canon Martyn Taylor (Lincoln) moved an amendment valuing people with Down’s syndrome “before as well as after” their birth. He referred to Heidi Crowter, a 22-year-old “self-advocate” with Down’s syndrome, who had spoken at a fringe event the previous day, and said that parents were not told about the potential that these people had and what happiness they brought.

The widespread use of NIPT could foster a toxic culture of perfectionism, and even eugenics, he warned. Parents under pressure to abort their Down’s-syndrome foetuses would be cheered to hear the Synod affirm the dignity of the child that they were carrying before birth as well as afterwards, he argued.

Bishop Newcome said that he had sympathy for the amendment, but urged the Synod to reject it. Whether inadvertently or not, the amendment touched on a more contentious and complex debate about when an embryo became fully human, which was an important debate, but not one for today. “This is not the place or the process to open up those issues,” he said.

Dr Nick Land (York) spoke of his 20 years spent working as a specialist psychiatrist for people with learning disabilities. “They are people: they love and they are loved,” he said. “Virtually none of their families would have been without their enriching presence in their life.” People with Down’s syndrome found society’s preoccupation with getting rid of them hard to bear, and the differing time limits for abortion for foetuses with disabilities entrenched discrimination, he said. He supported the amendment.

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The Prolocutor of the Lower House of the Convocation of Canterbury, Canon Simon Butler (Southwark), expressed fear that Canon Taylor’s amendment would move the Synod away from the focus of the motion and towards a discussion of the principle of abortion.

Canon Taylor’s amendment was lost.

Emma Forward (Exeter) spoke to and moved her amendment. She wanted to strengthen the final clause, using words from the guidance paper, which states that expecting parents should not be given information that presumes the termination of babies with Down’s syndrome.

Bishop Newcome said that he agreed with almost everything Ms Forward said, but that her amendment ran a serious risk of derailing the motion and making it harder for the Church to put it to the Government and professional bodies. It could also be construed as contravening the General Medical Council’s guidelines by putting pressure on women, or even criticising them. He asked the Synod to resist the amendment.

Andrew Gray (Norwich) spoke in support. This debate was not about abortion, he said, but it was impossible to ignore it. Across Europe, de facto voluntary eugenics was under way: termination rates were nearing 100 per cent for unborn children diagnosed with Down’s. “Quite frankly, there are some stark comparisons with the Third Reich,” he warned.

Ms Forward’s amendment was lost.

Dr John Appleby (Newcastle) moved an amendment seeking to improve on the “comprehensive, unbiased” information available to parents.

The Revd Eleanor Robertshaw (Sheffield) spoke about Simon, a man with Down’s syndrome. Whenever he was present in church, “the atmosphere was lifted.” Whenever he was present, “the congregation goes from being handshakers to huggers,” she said. “Simon does bring out the best in us all.”

His parents had wanted her to tell the Synod about the “struggle they faced” when bringing him up. It had been an “exhausting fight to get where they needed to be”. People needed “comprehensive information” about what they would face in future.

Sue Adeney (Worcester) described how learning that she was at high risk of having a Down’s-syndrome baby “tore our world apart. We clung to each other that weekend in fear.” Even her husband, a GP, “felt a loss of control”. But they rejected the invasive test. The consultant was “dumbfounded”, she said. “It was as if he was programmed for that route only.” This had taken place 25 years ago, and her daughter had been born without Down’s syndrome. She had no hesitation in supporting the amendment.

The amendment was carried.

Prudence Dailey (Oxford) spoke of the termination rate of almost 100 per cent in Iceland. Denmark was not far behind: it expected to be “Down’s-syndrome-free” by 2030. The UK was not far off.

Both countries insisted that mothers were not coerced, but the figures told a story of women in a society that “nudged” them towards abortion. She gave examples in these countries of medical professionals’ using terms such as “malformed foetuses”. There was only one word for this: “eugenics”, which was “an offence against humanity and against God”.

Her amendment encouraged partner Churches in the Porvoo Communion to affirm the full humanity of people with Down’s syndrome, and to “oppose any policy of making society Down’s-syndrome free”.

Bishop Newcome resisted this amendment, because a “very clear” motion was needed that could be put in front of medical professionals and the Government. The amendment would be “utterly inexplicable” to these bodies. But he was open to opening up the discussion with other Churches, “through the proper ecumenical channels”.

Archbishop Welby undertook to discuss this matter with the Porvoo Primates at their next meeting, and Miss Daley’s amendment was lost.

The Bishop of Ely, the Rt Revd Stephen Conway, spoke as the Anglican bishop accompanying L’Arche communities, through which he had met many people with Down’s. Disabled people had “much to teach us about living in the truth and working for inclusion. So many contemporary ideologies seek tidy but coercive uniformity. . . But the real joy is found when we rejoice in diversity and difference, including in physical or intellectual ability.”

The Revd Tiffer Robinson (St Edmundsbury & Ipswich) was a parent of a child with autism, who was diagnosed at the age of three. There were similarities, he said. She was years behind her peers, socially and academically, but had a strong and childlike faith. “She is a wonderful child — a handful, sometimes, who needs a predictable and strong family life, and I often wonder why, in that case, God gave her to us,” he joked.

He understood why parents thought that they could not cope, and considered abortion, “but there is no reason not to bring children of God into the world, and help them as best as we can.”

Caroline Herbert (Norwich) welcomed the motion, but would have loved to be able to hear the voices of people with Down’s syndrome in the chamber. She acknowledged, however, that some members had heard from Ms Crowter at a fringe meeting the previous night.

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The Revd Tim Goode (Southwark) spoke of his hereditary congenital bone condition. He had undergone invasive surgery, and had physical disabilities and an increased risk of cancer. But he had also been given huge opportunities, which had led him to ordination. “All too often, it is the negative narrative which is reflected back on to me,” he said. “We need to listen and learn from the lived experience of those who live with Down’s and other disabilities.”

Bishop Newcome expressed knew of no current support network for parents with Down’s children; so, if the motion was carried, he hoped that the Church would make a commitment, and that there would be wider implications.

Responding to the call for Down’s people to contribute, he screened video clips of adults and children with Down’s thanking the Synod for considering the motion.

A unanimous vote by the whole Synod was recorded: 284 in favour, nem. con.

The final motion read:

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 and be provided with full information about the support available and the future prospects of those with this condition, with no implied preference for any outcome.

 

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