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General Synod digest: Emotional debate on supporting families after disability diagnosis

12 July 2024

Sam Atkins/Church Times

The Archdeacon of Knowsley and Sefton, the Ven. Pete Spiers

BETTER support and compassion for families facing the news that their unborn child was disabled was endorsed almost unanimously after an emotional debate.

The Archdeacon of Knowsley and Sefton, the Ven. Pete Spiers, introduced the motion from Liverpool diocese on Sunday afternoon. He said that support and advice for women who were facing an unexpected pregnancy of a disabled child was sadly lacking, and often the only alternative offered was abortion.

“With the right support at the right time, it is possible to help pregnant mothers and their unborn children to carry on with their lives and be happy,” he said. Whether a pregnancy proceeds or is ended, “love, compassion, and grace are needed more than anything.” An informal “Magnificat Group” had been formed in his diocese of Liverpool of those with experience of disability to offer such services to women. The Church must not “fall into silence” simply because the issue was difficult.

Archdeacon Spiers, who was born affected by Thalidomide, before the advent of prenatal screening, said that he might not be here had he been born years later. The motion before the Synod had been passed unanimously by both the deanery and diocesan synods.

Women should have the right to choose an abortion, Archdeacon Spiers said, but only after knowing all the options. All children were unique and made in the image of God, and having a disability did not change that, he said. Parents needed to know what financial and practical support was available to them if they did continue a pregnancy and raised a disabled child.

Dr Simon Eyre (Chichester) said that both his career as a GP and other volunteering had transformed his appreciation of disabled people, who have as much to give as receive, he said. If these people had had their lives ended in utero, it would have been a tragedy. NHS statistics showed that 87 per cent of people diagnosed with Down’s syndrome in the womb were aborted. Society must do better by those who were disabled; for everyone was “fearfully and wonderfully made”. He backed the motion.

The Revd Kate Wharton (Liverpool) said that she had been privileged to be part of the Magnificat Group. She recalled a previous Synod debate in 2018 on Down’s syndrome, and a speech from the Down’s activist Heidi Crowter, who campaigns against the law on abortion of disabled foetuses. All the Church should believe that everyone was made equally in God’s image, but “we are bad at living this out,” she said. She had, she said, heard numerous stories of exclusion when running an accessible church project.

Sam Atkins/Church TimesThe Revd Kate Wharton (Liverpool) who chairs the Steering Committee, resists the Scowen amendment

The Archbishop of Canterbury spoke of his 32-year-old daughter, Ellie, who was neurodiverse, who lived with him at Lambeth Palace. During the pregnancy, a test had been offered, but should it prove positive it was made clear that a termination would follow, he recalled. Ellie is “exceptionally precious”, he said. Once, around the dining table, his family had had a conversation about divine healing — but if she was healed, she would no longer be Ellie, Archbishop Welby said. He hoped that the motion would be carried, because of the Church’s belief in human dignity and a God who moved in the world.

Canon Andy Salmon (Manchester) said that his eldest daughter, Zoë, had begun to show signs of not developing normally at about 18 months old, and was eventually diagnosed with learning difficulties. Growing up with her was a mixture of lows and highs, as with any child, but Zoë showed him that disabled people can make a positive contribution. After she turned 20, a new genetic test was finally able to identify the cause of her disability. A similar chromosomal abnormality could be detected in utero today. Parents of children with disabilities need not just support, but also hope that there is something to move on to, and communities such as L’Arche where Zoë lived was fantastic, he said.

The Revd Chantal Noppen (Durham) said that she was ambivalent about the motion. A lifetime of inclusion and acceptance was needed for disabled people and their families. The motion needed to be accompanied by a push for better NHS and social care, and childcare, she said. Lots of the charities working with disabled children were hostile to LGBT children; “every child” should mean every child, she said.

People in the Synod chamber had had abortions, and their identities were being dismissed and their decisions judged. The neurodiverse community had a large quantity of LGBT folk who did not believe that they were called to celibacy, and could not fit into the Church’s box for them. Do they still matter? Will they still be welcomed, she asked. The Synod must be honest about what it actually believed.

The Revd Rachel Wakefield (St Albans) supported the motion, but questioned how the original briefing paper had misunderstood the concept of invisible disabilities. Her own son had a physical, invisible disability, hypermobility syndrome, and had been unable to walk for a long time. Too many Christians sought to pray for his healing instead of “accepting him as he is”. Now that he no longer uses a wheelchair, many struggled to believe that he was truly disabled, she said.

The Revd Alice Kemp (Bristol) had decided not to have tests for her second child, who was born with complex disabilities and high-support needs. “Life was immensely challenging and exhausting, and support from our local church was crucial.” It helped her family to know that they were not alone, she said. Turning 18 often led to a cliff-edge of care, and needed reform. “We had to endure three years of nightmare accommodation for our son when he had to move out due to my health needs.”

Mary Bucknall (Deaf Anglicans) said that one baby in 1000 in Britain was born with some degree of hearing loss due to genetic causes. Her late younger sister and herself were born profoundly deaf, but it took 18 months for her to be properly diagnosed. She was relieved that there was no prenatal screening for genetic deafness at that time, otherwise she might not have had a chance to live.

Life remained a struggle for thousands of people born deaf or disabled, she said. Some people argued that it would be better not to be born with a disability; but she believed that God had a purpose when he created disabled people in the womb, “so his love and care could be displayed for all to see” — something she had experienced. Disabled children needed to know that they were loved for who they were; churches could help in this with practical support.

Sam Atkins/Church TimesRebecca Chapman (Southwark)

Rebecca Chapman (Southwark) said that she had discovered at the 20-week scan that her third son had markers for both cystic fibrosis and Down’s syndrome. She was bombarded with information, and told that she had choices for things she never wanted to make. A Christian friend praying with her was an invaluable comfort and calm.

Her son did not have Down’s syndrome, but was autistic. Getting the support he needed had been a real battle, she said, ”fighting again and again”. Her son was worth every moment of battling a faceless system, but it should not have to be so hard. Church was also not always welcoming of difference and disability — “let’s not be a Church which stands and stares, but asks how it can help.” She urged members to consider what more their own congregations could do to help disabled children to thrive.

Canon Valerie Plumb (Oxford) was born with spina bifida, in the era before scans. Her parents were told that she would not live past ten, 20, 30 years old, but she remained alive at 55. “Don’t give up hope when it seems hopeless,” she told the Synod. The services stopped for people with spina bifida when they turned 18, she said, echoing other speakers’ concerns. She often wondered what would have happened if her mother had made the choice to stop hoping; but different people triggered different creativity and ways to see God. “Let’s let that beautiful prism of God’s love shine completely.”

Jeanette Appleton (St Edmundsbury & Ipswich) focused on the latter half of the motion, lamenting funding cuts which had seen NHS and government initiatives fall away. What was needed was a long-term commitment from the Government to funding services for disabled children and their families fully, she said, her voice breaking with emotion. “I have spent 40 years working on this, and we seem to have got nowhere.” Every diocese should have a fully funded, full-time diocesan disability officer, and everyone in the Church should consider how they can be more welcoming to disabled people of every age.

Dr Julie Maxwell (Winchester), a paediatrician, said that she was all too aware of the struggles facing families of children with additional needs. Her own church had started a group for children and young adults with disabilities, which had brought huge blessings to the community, she said. Having a child with a disability was “not a tragedy to be avoided”. Christians must be active advocates, as well as welcoming.

Catharine Rhodes (Sheffield), a retired obstetrician, said that there would be many in the chamber, and listening online, who had been through the traumatic experience of learning that an unborn child was disabled. Nobody could tell how people would respond to this news. She was sorry to hear about bad experiences that people had had, but there were parts of the NHS which offered fantastic support to mothers; it was simply deeply underfunded across the board. She welcomed the motion, in particular how did it not attempt to prescribe to mothers how to deal with such pregnancies.

Canon Jane Richards (Chelmsford), a former hospital chaplain with experience of supporting families in these circumstances, welcomed the motion, and, in particular, its refusal to judge women who chose termination. Last year, her daughter, a GP, had discovered that their baby boy, at 20 weeks, had a severe brain impairment incompatible with life. Her daughter had supported other women receiving such devastating news, but grappling with this information was the hardest week of her life.

Her grandson did not survive his birth, and, in the aftermath, her daughter had struggled to come to terms with his loss. She had felt isolated and bereft, and had not found appropriate support that acknowledged her pain. Ms Richards urged members to support the motion and to hold in prayer those faced with impossible decisions.

Elaine Heath (Deaf Anglicans) said that she had two hearing sons who were thriving, but, when she was was expecting her second, the doctors pressured her to take a test, as she was an older mother. She refused, as she did not want to have an abortion whatever the outcome. What families needed was important, but the Church must also think of the children who were not yet born, and what they needed, “because that child, too, has a right to live”.

The Bishop of London, the Rt Revd Sarah Mullally, said that she had been much moved by the debate. The Archbishops’ Commission on Reimagining Care, which she co-led, would not only support the motion but take forward its calls directly.

Responding to the debate, Archdeacon Spiers said that he had lost count of how many times people had prayed for healing for him and his disability. He preferred to talk about “wholeness”, and, in fact, loved praying for others’ healing and wholeness using his own disabled hands, and in the name of a God “whose power is made perfect in weakness”. This brought out a spontaneous round of applause across the chamber.

After a moment of silence, the Synod carried the motion by 312-4, with no recorded abstentions:

That this Synod, reaffirming its belief that every person is unique and precious and made in the image of God, and endorsing section 6 of the Equality Act (2010):

(a) challenge the common assumption that bringing a disabled child into the world is a tragedy to be avoided;

(b) call upon healthcare providers and other public authorities to improve the support they give to the parents and families of children born with disabilities;

(c) call upon His Majesty’s Government and healthcare providers to ensure that mothers whose unborn child may be disabled in any way are given comprehensive and unbiased information about the condition and support available to them;

(d) call upon dioceses, parishes and chaplaincies to consider how they might better witness to the human dignity of disabled children, including the better pastoral advice and support they might offer to their parents and families.

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