A wise debate about Down’s syndrome could have a huge impact, Synod is told

09 February 2018

MADELEINE DAVIES

Family: (left to right) Heidi Crowter, Sally Phillips, Liz Crowter, Heidi’s mother

Family: (left to right) Heidi Crowter, Sally Phillips, Liz Crowter, Heidi’s mother

SOCIETY has got “stuck” in the debate about pre-natal screening and disability, and needs the “wise men and women” of the Christian faith to help it move forward, Sally Phillips, an actor, told Synod members on Friday, on the eve of a debate about valuing people with Down’s syndrome (News, 26 January).

In an emotional speech to a fringe meeting, Ms Phillips described how people in the Down’s community had been “extremely bruised by attitudes revealed in recent debates around screening”, and that voices on both sides had “proliferated and got more strident”.

“They are equal and opposite forces struggling with each other, and I’m not sure how much actual progress we are making, or that we are finding a way through,” she said.

“I hope and pray that the wise men and women of this ancient faith can help us . . . find a better language to talk about these issues, that you can teach us, amplify deeper, better concepts, to think in.” She spoke of her concern that technology had “outstripped our ability to think these issues through”.

She spoke after Heidi Crowter, a self-advocate for Down’s syndrome, who began her speech with a prayer (“please help the Synod and give them wisdom to make the right decisions”). She referred to scripture throughout her remarks, in which she described her “bold and full life”, including work at a hair salon and volunteering at a cafe.

“All of us are fearfully and wonderfully made, and made in God’s image,” Ms Crowter said. “I wish doctors and midwives would change their views about Down’s syndrome, and not tell parents it’s bad news.” She would tell parents expecting a baby with Down’s Syndrome “not to be scared; find out about Down’s syndrome; meet young adults with Down’s; and love your baby as any other baby.”

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She went on: “Ever since I first walked through my church doors, was there a debate about whether to accept and value me? No, there wasn’t. . . I am valued as an equal by everyone at my church.”

Ms Phillips said that it had been her experience that people with Down’s syndrome had “very vibrant spiritual lives”, and suggested that Heidi had “the calling of Esther on her life: to speak out for her community and to save them.”

“If the Church can model love for people with disabilities in a contagious way, and minimise the fear and stigma of Down’s syndrome, I honestly believe that the impact of this motion will be felt for many years to come, and will be measurable in numbers of people on the planet,” she said. The motion had felt to those in the Down’s Syndrome community “like a ‘praise to my God who sees me’ moment”.

Saturday’s motion has been tabled as the NHS prepares to roll out non-invasive pre-natal testing (NIPT) to about 10,000 women who are at higher risk of a having a child with Down’s syndrome. In 2016, Ms Phillips, an Anglican whose son, Olly, has Down’s syndrome, explored the new technology in a documentary that included a visit to Iceland where the termination rate is almost 100 per cent.

The Synod motion welcomes NIPT, but calls for parents to be given “comprehensive, unbiased information” about Down’s syndrome. The Church’s national adviser on medical ethics, the Revd Dr Brendan McCarthy, believes that better, up-to-date information could prevent a replication of Iceland’s and Denmark’s experiences.

“Your Church’s position on abortion doesn’t place it outside the mainstream, so I am more than hopeful that your deliberations will speak to and be of use to all reasonably-minded people, Christian and not, who sense there is more to being human than can be explained by genetics and bioethics alone,” Ms Phillips said.

“People with disabilities of course ask awkward questions of society about the meaning and quality of life: questions that, in my humble opinion, require spiritual answers. . .

“We used to screen for Down’s syndrome because life with Down’s syndrome was short and hard. Now we screen because life is long and the presumed burden is costly, and that’s a profound ethical shift in priorities that’s gone largely unnoticed. Nobody knows what to do with that.”

It was the Church’s mission and duty to “stand against the prevailing culture of our day, which I take to be a miserable and individualist utilitarianism,” she said. The idea that we had a “moral obligation to produce the healthiest and best children possible” was “taken very, very seriously by governments”.

She described how one friend had been rung nine times during the course of her pregnancy to be offered a termination, in case she had changed her mind. There was no support pathway for women choosing to continue with a Down’s-syndrome pregnancy.

The Church must also speak out against the effects of austerity on people with disabilities and those caring for them, she said, and could have a “huge and long-lasting” impact by “reprioritising inclusion” in its schools.

The Synod motion was welcomed at the meeting by Dan Scorer, head of policy and public affairs at Mencap, who described how progress in the lives of people with learning disabilities was “fragile, and may indeed be going backwards in the light of the financial pressures on public services”. He cited government research, which estimated that 1200 people with a learning disability die avoidably every year. This week, an inquest into death of Richard Handley, a young man who had Down’s syndrome and suffered from constipation, found “gross [and] very significant failures” at almost every stage of his care.

During the meeting, the possibility of an amendment to the motion was raised. Ms Phillips, who described the motion as “excellently crafted to be as uncontroversial balanced and inclusive as possible”, cautioned against anything that might imperil its passing, or “create bias against people who have terminated. We have to have equal compassion to people who’ve made that choice.”

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