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 ladies who were facing an unexpected pregnancy of a disabled child was sadly lacking, and infrequently the one alternative offered was abortion.
“With the precise support at the precise time, it is feasible to assist pregnant moms and their unborn children to hold on with their lives and be completely happy,” he said. Whether a pregnancy proceeds or is ended, “love, compassion, and style are needed greater than anything.” An informal “Magnificat Group” had been formed in his diocese of Liverpool of those with experience of disability to supply such services to women. The Church must not “fall into silence” just because the difficulty was difficult.
Archdeacon Spiers, who was born affected by Thalidomide, before the appearance of prenatal screening, said that he may not be here had he been born years later. The motion before the Synod had been passed unanimously by each the deanery and diocesan synods.
Women must have the precise to decide on an abortion, Archdeacon Spiers said, but only after knowing all the choices. All children were unique and made within the image of God, and having a disability didn’t change that, he said. Parents needed to know what financial and practical support was available to them in the event that they did proceed a pregnancy and raised a disabled child.
Dr Simon Eyre (Chichester) said that each his profession as a GP and other volunteering had transformed his appreciation of disabled people, who’ve as much to offer as receive, he said. If these people had had their lives led to utero, it could have been a tragedy. NHS statistics showed that 87 per cent of individuals diagnosed with Down’s syndrome within the womb were aborted. Society must do higher by those that were disabled; for everybody was “fearfully and splendidly made”. He backed the motion.
The Revd Kate Wharton (Liverpool) said that she had been privileged to be a 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 consider that everybody was made equally in God’s image, but “we’re bad at living this out,” she said. She had, she said, heard quite a few 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, across the dining table, his family had had a conversation about divine healing — but when she was healed, she would now not be Ellie, Archbishop Welby said. He hoped that the motion could be carried, due to Church’s belief in human dignity and a God who moved on the planet.
Canon Andy Salmon (Manchester) said that his eldest daughter, Zoë, had begun to indicate signs of not developing normally at about 18 months old, and was eventually diagnosed with learning difficulties. Growing up together with her was a mix of lows and highs, as with all child, but Zoë showed him that disabled people could make a positive contribution. After she turned 20, a recent genetic test was finally capable of discover the reason behind her disability. The same chromosomal abnormality might be detected in utero today. Parents of youngsters with disabilities need not only support, but in addition hope that there’s something to maneuver on to, and communities similar to L’Arche where Zoë lived was improbable, he said.
The Revd Chantal Noppen (Durham) said that she was ambivalent in regards to 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 higher 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 within the Synod chamber had had abortions, and their identities were being dismissed and their decisions judged. The neurodiverse community had a great quantity of LGBT folk who didn’t consider that they were called to celibacy, and will not fit into the Church’s box for them. Do they still matter? Will they still be welcomed, she asked. The Synod should be honest about what it actually believed.
The Revd Rachel Wakefield (St Albans) supported the motion, but questioned how the unique 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 very long time. Too many Christians sought to wish for his healing as an alternative of “accepting him as he’s”. Now that he now not uses a wheelchair, many struggled to consider that he was truly disabled, she said.
The Revd Alice Kemp (Bristol) had decided to not have tests for her second child, who was born with complex disabilities and high-support needs. “Life was immensely difficult and exhausting, and support from our local church was crucial.” It helped her family to know that they weren’t alone, she said. Turning 18 often led to a cliff-edge of care, and needed reform. “We needed to endure three years of nightmare accommodation for our son when he had to maneuver out attributable to my health needs.”
Mary Bucknall (Deaf Anglicans) said that one baby in 1000 in Britain was born with some extent of hearing loss attributable to genetic causes. Her late younger sister and herself were born profoundly deaf, but it surely took 18 months for her to be properly diagnosed. She was relieved that there was no prenatal screening for genetic deafness at the moment, otherwise she may not have had a probability to live.
Life remained a struggle for hundreds of individuals born deaf or disabled, she said. Some people argued that it could be higher to not be born with a disability; but she believed that God had a purpose when he created disabled people within the womb, “so his love and care might 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 assist in this with practical support.
Sam Atkins/Church TimesRebecca Chapman (Southwark)
Rebecca Chapman (Southwark) said that she had discovered on the 20-week scan that her third son had markers for each cystic fibrosis and Down’s syndrome. She was bombarded with information, and told that she had decisions for things she never desired to make. A Christian friend praying together with her was a useful comfort and calm.
Her son didn’t have Down’s syndrome, but was autistic. Getting the support he needed had been an actual battle, she said, ”fighting many times”. Her son was price every moment of battling a faceless system, but it surely mustn’t need to be so hard. Church was also not all the time welcoming of difference and disability — “let’s not be a Church which stands and stares, but asks how it could help.” She urged members to contemplate what more their very own congregations could do to assist disabled children to thrive.
Canon Valerie Plumb (Oxford) was born with spina bifida, within the era before scans. Her parents were told that she wouldn’t live past ten, 20, 30 years old, but she remained alive at 55. “Don’t hand over hope when it seems hopeless,” she told the Synod. The services stopped for individuals with spina bifida once they turned 18, she said, echoing other speakers’ concerns. She often wondered what would have happened if her mother had made the alternative to stop hoping; but different people triggered different creativity and ways to see God. “Let’s let that stunning 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 even have spent 40 years working on this, and we appear to have got nowhere.” Every diocese must have a totally funded, full-time diocesan disability officer, and everybody within the Church should consider how they might be more welcoming to disabled people of all ages.
Dr Julie Maxwell (Winchester), a paediatrician, said that she was all too aware of the struggles facing families of youngsters with additional needs. Her own church had began a gaggle for kids and young adults with disabilities, which had brought huge blessings to the community, she said. Having a toddler with a disability was “not a tragedy to be avoided”. Christians should be energetic advocates, in addition to welcoming.
Catharine Rhodes (Sheffield), a retired obstetrician, said that there could be many within 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 reply to this news. She was sorry to listen to about bad experiences that folks had had, but there have been parts of the NHS which offered improbable support to moms; it was simply deeply underfunded across the board. She welcomed the motion, specifically how did it not try to prescribe to moms how you can cope with such pregnancies.
Canon Jane Richards (Chelmsford), a former hospital chaplain with experience of supporting families in these circumstances, welcomed the motion, and, specifically, its refusal to guage women who selected termination. Last yr, 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 toughest week of her life.
Her grandson didn’t survive his birth, and, within the aftermath, her daughter had struggled to come back to terms together 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 carry in prayer those faced with unattainable 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 didn’t wish to have an abortion regardless of the consequence. What families needed was necessary, however the Church must also consider the youngsters who weren’t 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 talk. The Archbishops’ Commission on Reimagining Care, which she co-led, wouldn’t only support the motion but take forward its calls directly.
Responding to the talk, Archdeacon Spiers said that he had lost count of how persistently people had prayed for healing for him and his disability. He preferred to discuss “wholeness”, and, in reality, loved praying for others’ healing and wholeness using his own disabled hands, and within 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 all and sundry is exclusive and precious and made within 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 enhance the support they provide to the parents and families of youngsters born with disabilities;
(c) call upon His Majesty’s Government and healthcare providers to be certain that moms whose unborn child could also be disabled in any way are given comprehensive and unbiased information in regards to the condition and support available to them;
(d) call upon dioceses, parishes and chaplaincies to contemplate how they could higher witness to the human dignity of disabled children, including the higher pastoral advice and support they could offer to their parents and families.
