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Parents of disabled children deserve better information and support, Synod says

07 July 2024

Sam Atkins/Church Times

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

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

PARENTS facing a diagnosis of disability in their unborn children must be offered better support, grounded on the inherent God-given dignity of all, the General Synod heard on Sunday afternoon.

It was the key message from a moving debate on a motion from the diocese of Liverpool, which challenged a culture of presuming a prenatal diagnosis of disability was a “tragedy”. It also urged both the NHS and the Church of England to improve what is offered to parents.

The motion was passed, almost unanimously.

The debate was led by the Archdeacon of Knowsley and Sefton, the Ven. Pete Spiers, who was born disabled due to Thalidomide. He was deeply grateful that his parents did not have access to prenatal screening and were therefore not faced with the dilemma of whether to terminate the pregnancy or not.

“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.”

The motion was careful not to condemn parents who choose an abortion, but several other speakers who were disabled or had disabled children echoed Archdeacon Spiers’ remarks.

In a speech that left few dry eyes around the chamber, Mary Bucknall (Deaf Anglicans Together) explained that she was born deaf owing to a genetic abnormality; she was relieved that her chance to live was not threatened by prenatal screening at the time.

She recognised that some 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 she said that had experienced.

Similarly, the Revd Valerie Plumb (Oxford), told her own story of being born with spina bifida, and how her mother had been told that her baby would probably not live past the age of ten. “Do not give up on hope, even when it seems hopeless,” was her message to parents facing a similar dilemma.

Sam Atkins/Church TimesThe Archbishop of Canterbury

Elaine Heath, another deaf representative, said that she had refused prenatal testing for her children, as she could never have aborted them simply for being disabled. As well as addressing the needs of families, the Church must also hold in mind the needs of the unborn disabled children, too, “because that child too has a right to live”.

The Archbishop of Canterbury spoke of his daughter Ellie, who was neurodiverse and lived with him at Lambeth Palace. He and his wife had been offered various tests before she had been born, but all with an overbearing presumption that, if positive, a termination must quickly follow. Instead, they let the pregnancy proceed and have, he said, enjoyed 32 years of family with their “exceptionally precious” daughter.

Others spoke of their trials and struggles to secure the right support, funding, and care for their own disabled children, and the failure of the Government to fund NHS services adequately for pregnant women post-diagnosis.

Also raised was the problem of the post-18 cliff-edge, when many services are withdrawn but the needs of the disabled person, now an adult, often remain.

Rebecca Chapman (Southwark) told members that getting enough support for her autistic son had been an endless battle, scrapping away year after year. Of course her son was worth every moment spent battling a faceless system, she said, but it should not have to be so hard. The Church was also not always welcoming of difference and disability, she continued. “Let’s not be a Church which stands and stares, but [one that] asks how it can help.”

There were a handful of dissenting voices, including the Revd Chantal Noppen, who, although she backed a push to see the NHS better funded, social care overhauled, and childcare better developed, said that many of the same Christian charities fighting for the rights of disabled unborn children were simultaneously hostile to the large numbers of LGBT+ people within the disabled community.

She warned some of the speakers against judging mothers who choose abortion (many of whom would be sitting in the same chamber, she said), and for dismissing the identities of LGBT Christians not called to celibacy, and who did not fit into the Church’s presumptions about how they should live.

Overall, however, there was a wave of support for the motion, which was ultimately carried 312-4, with no abstentions.

The full motion reads:

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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