By Chris Asprey

An unborn child with Down’s syndrome may lawfully be killed in the womb up to the time of birth. Last week, we heard the anguished voices of adults with Down’s syndrome speak out in protest at a law which deems them expendable.

What a year it’s been for people with Down’s syndrome. Heidi Crowter, a young woman with Down’s syndrome, has risen to prominence as a powerful and eloquent campaigner. And actor Tommy Jessop, who also has the condition, was awarded a doctorate honoris causa by the University of Winchester following his performance in the BBC hit series Line of Duty. 
But it hasn’t all been good news. Earlier in the year, Richard Dawkins reiterated on live radio his claim that knowingly bringing a child into the world with this chromosomal abnormality is immoral. And last week Crowter lost her High Court challenge to the Government over a law that allows abortion up to birth for a foetus with Down’s syndrome. 
The nuanced decision of the High Court judges, who deferred responsibility for a law which Crowter argues discriminates against people with Down’s syndrome back to parliament, may differ in tone from the rhetorical bombast of the Oxford biologist. But both reinforce the belief that a disability such as Down’s syndrome generates a higher quantum of suffering than a family or individual may reasonably be expected to bear. 
L’Arche, the organisation for which I work, commits to forming life-sharing communities whose “core members” have intellectual disabilities. We know plenty about their gifts and potential, as well as something of the sufferings and challenges presented by disability. However – and this is the very point of L’Arche – these challenges are borne by being distributed collectively across a community. 
For parents and families, however, it can be a different matter. Whereas an assistant chooses to join L’Arche, a disabled child arrives in a family unbidden, unexpectedly and sometimes overwhelmingly. Take, for example, Jonathan Barraclough, a member of L’Arche in Edinburgh who has Down’s syndrome. 


Jonathan was born in Eastbourne hospital in 1970. When he was six weeks’ old, his parents, David and Christine, were called for an appointment with the paediatrician. At the time, they had no idea he had Down’s syndrome, and assumed the appointment was for an infection Jonathan was fighting off. As they sat down, the doctor asked them: “What do you know about mongolism?” 
“It was quite an acceptable term back then, not a swear word,” David says. He and Christine told the doctor they didn’t think the condition was too bad. They were met with a chilling reply. “No. Jonathan will probably never walk, never talk. Best to put him away.” 
It was only gradually that David and Christine discovered the full implications of Jonathan’s disability. He speaks in what David calls “telegraphese” – single words, rather than phrases and sentences. And they would later realise Jonathan was also profoundly deaf, having assumed for many years that he sometimes chose to ignore people who wanted to speak to him. Furthermore, Jonathan was a “tearaway,” as David puts it. He and Christine constantly had to keep him in check, preventing him from jumping up ladders or cleaning him up after another hands-on inspection of the fireplace. 
Throughout his childhood, the family’s approach – “our philosophy, to give it a grand word” – was to treat Jonathan as normally as possible. That was the key to bringing him up, according to Jane, Jonathan’s sister. “He’s had a busy life – and a lot of that is down to mum and dad. They always had to keep him occupied, to get the most out of him and give him the best life possible. And he was hard work. When we went on walks, I would tag along, while he would go rushing on ahead, climbing all over things.” 

Thanks to the support they received from a pre-school teacher, Jonathan attended an ordinary playgroup for two years, before joining a primary school outside Bexhill. He would make the nine-mile journey unaccompanied in a taxi. David chuckles as he recalls the moment they visited the school for the first time. “The Parents Association had been fundraising to build an indoor swimming pool, and the teacher who was showing us round proudly took us there first. Jonathan loved swimming, and the moment he caught sight of the pool, he rushed over and jumped in, fully clothed, swiftly followed by an anxious teacher.” 


The family moved to Edinburgh, where Jonathan’s education continued. David had a secure job and a stable income, but that didn’t mean that they found life easy. “It’s been a journey, an enjoyable journey,” David says, “but with ups and downs.” 
“The teenage years were the hardest for me,” Jane adds. “You could never just blend in. You’d always be noticed. But what a lot of laughs we had! Life was never dull. When I first moved to my own home, it felt so quiet, I didn’t like it.” 
As a young man, Jonathan went on to attend adult training centres, which brought various work opportunities, both paid and unpaid. There was a mailing cooperative, where he happily stuffed envelopes for several years; the staff canteen of Scottish Widows, where Jonathan would welcome the diners and clear the tables; as well as several other cafés and bakeries. He still has a busy week in Edinburgh, working at a bakery, two well-known church cafés and a woodwork studio. 
Jonathan’s affable nature has made him hugely popular in the community. Jane fondly recalls his 21st birthday party, where Jonathan had packed the pub with friends from school, the local disco and the Down Syndrome Society football team. “Most parties take a while to spark,” she says, “but the moment Jonathan put the music on, he was up and dancing – and so was everyone else – right to the end.” 

Jonathan’s story appears to contradict the idea that the birth of someone with a disability such as Down’s syndrome increases the amount of suffering in the world. So what does David make of Richard Dawkins’ claim? “As a populariser of science he’s brilliant. My background is in physics, and I have learned an awful lot from reading his books. He claims to be big on logic, but this is utter nonsense, it really is.”
Meanwhile, Heidi Crowter has vowed to continue her fight for equality on behalf of people with Down’s syndrome. “The judges might not think [the law] discriminates against me, the Government might not think it discriminates against me, but I am telling you I feel discriminated against,” she said following the High Court ruling. The onus is now on MPs to show they value human life. If they need proof of the rich potential of people with learning disabilities, they could start with a visit to a L’Arche Community. 

First published in The Tablet (9.10.2021)