Down's syndrome is an awkward subject for the West. But we should attend to people's experiences
The day after Samantha was born, her mother Margaret was told she had Down’s syndrome. “After the doctors left my bed I held my baby tight and prayed to Our Lady and said I would always take care of her.
“They were very negative in the hospital, telling us she probably wouldn’t live past 21 and all these other health problems. I wanted to get out of the hospital so I could take her to church.”
Samantha, who was born on the feast of Our Lady’s Nativity, is now 30. Although verbal communication is limited, she has many books about Jesus, and her own rosary beads which she loves, and spends time in prayer with her parents. Prayer has been a vital support for the family.
“Samantha didn’t really understand about Jimmy but she did know he went out and never came home, so for a long time if she was going anywhere she would say ‘come back’ and if I was going anywhere she would say ‘mummy come back.’ She won’t mention his name, now.
Margaret is talking about her son, Jimmy Mizen, the 16 year old who was murdered outside a bakery in south east London the day after his birthday.
“I have always had a strong but simple faith and having Samantha seemed to seal my bond with God even more. Sometimes we let go of God at the one time we need him. That never happened to me: I just clung a bit tighter.”
Today is World Down’s Syndrome Day, a UN initiative launched in 2012 to recognise “the inherent dignity, worth and valuable contributions of persons with intellectual disabilities.”
This is an awkward subject for British society. Our many equality laws and inclusion policies are coupled with ever-advancing techniques to screen out and kill people with Down’s syndrome before they are born.
The latest abortions statistics reveal that in 2015, two per cent of all abortions, 3,213, were carried out on the grounds of ‘risk’ that the child would be born “seriously handicapped”. 689 of those aborted children were suspected of having Down’s syndrome. The Department of Health says the actual number is higher, perhaps closer to double.
Lord Kevin Shinkwin recently steered an – ultimately unsuccessful – Bill to remove disability as a grounds for abortion, which he calls “a licence to kill for the crime of being disabled”, while the Don’t Screen Us Out campaign is galvanising grassroots support against new ante-natal screening programmes by the NHS.
Thankfully, there are many parents who do not see their child as a “risk”, and who have resisted the expectation to seek abortion. The actress Sally Phillips memorably explored this experience in her BBC2 documentary A World Without Down’s syndrome.
Maria is 26 and has Down’s syndrome. Her mother Francesca says: “When she was born I was sad, fearing for her future.
“Yet raising Maria has deepened my faith. I can see the powerful effect for good she has on her siblings, friends and carers. ‘Unless you become as little children’ makes sense with her in our lives.
“She knows Jesus is in the Tabernacle, that she receives Jesus at Holy Communion, and that Our Lady appeared to St Bernadette in Lourdes, whom she chose as her Confirmation saint.
“When she was 10, Maria went to Lourdes with the HCPT pilgrimage. She picked up a pebble during the Stations of the Cross on the hillside and said, ‘Jesus walked on this stone.’ She brought it home and still has it.”
Long before the UN’s World Down’s Syndrome Day, the disabled were taking centre stage at the pilgrim site of Lourdes. Fr Tom Finnegan, a priest of the Clifton Diocese, has been taking pilgrims, including many with Down’s syndrome, every Easter since 1987.
“People with Down’s have a deep connection with faith. They often lack the doubt and desire to argue through reason, enabling them to be at ease with expressing their faith in prayer and worship, and witness easily through action more than words.
“Their ease with God shows to me how we can sometimes over complicate our faith. They seem closer to God by nature.”
Another young woman with Down’s syndrome, Rachel, 17, says: “I go to church and say prayers, it gives me time and space to think about people I miss who aren’t here anymore.”
There is even a religious order, The Little Sisters Disciples of the Lamb, founded in France in 1985, specifically for women with Down’s syndrome with a vocation to the religious life. They follow the Little Way spirituality of St Therese and the Benedictine rule.
From its beginnings it was supported by Professor Jérôme Lejeune (1926-1994), the French geneticist who discovered the cause of Down’s Syndrome. Held in high esteem among colleagues internationally, he was also a staunch opponent of France’s move to legalise abortion. A friend of Pope John Paul II, he is now on the path to canonisation.
In today’s France, TV adverts showing positive portrayals of children with Down’s syndrome are banned, for fear of making people uncomfortable.
A strong and punchy conclusion usually comes at this point, but it seems more fitting to give the last word to Alice, a woman with Down’s syndrome, who has been travelling to Lourdes for many years.
After Mass one day her pilgrim group prepared to board a coach for a day in the mountains, but Alice remained kneeling in front of the Tabernacle.
When the priest approached to tell her they were ready, she turned and said, “Jesus is in my heart, he is my all, he is my everything.”