IN recent months there has been what might be considered an unfortunate conflation between abortion and Down syndrome (DS). This was intensified by the Save the Eighth campaign designed by the Love Both group. Headlined ‘90% of babies diagnosed with Down syndrome in Britain are aborted’ some Love Both publications feature photographs of children with DS.
It seems that the 2013 ‘source’, quoted on their their publicity, might come from the notes of a cross-party committee chaired by Fiona Bruce, Conservative MP in the UK. The ‘Bruce Enquiry’, which was informal rather than official, relied on data from the annual report of the National Down Syndrome Cytogenetic Register for England and Wales, 2010.
This research shows that whilst a large percentage of expectant mothers, who have been tested, decide to terminate their pregnancy, others go to term, irrespective of a diagnosis of DS. Additionally around a third of women refuse prenatal tests and, of those, some live births are children with DS.
Could Ireland become like Iceland averaging only one or two DS deliveries per year? Helga Sol Olafsdottir, head of the Prenatal Diagnosis Unit at Landspitali University Hospital in Reykjavik counsels women who are considering ending their pregnancy over a foetal abnormality. She tells mothers: “This is your life. You have the right to choose how your life will look like.”
“We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder – that’s so black and white. Life isn’t black and white. Life is grey.”
In 2012 the long running BBC R4 soap opera, The Archers, ran a plotline in which Mike Tucker’s wife Vicky was pregnant with a foetus diagnosed as DS. Astonishingly, as recently as that, the BBC designed a poll asking listeners to vote saying whether they thought that the pregnancy should be terminated. This was taken down after listeners and commentators explained how tasteless and exploitative the idea was.
A BBC spokesman said: “The Archers storyline on Mike and Vicky’s pregnancy has been well-received by the audience and raises a number of important issues about Down Syndrome, informed by the advice and expertise of the Down Syndrome Association. However this issue is too complex and sensitive for an online poll and we regret any offence the poll may have caused’.
Bethany Tucker, ‘the most beautiful girl in the world’ was born on 16th January 201. By 2016, as she approached pre-school, it was deemed best for the family to move to Birmingham to seek specialist help. In respect of the script editors’ decision, a senior research fellow from Manchester Metropolitan University, Katherine Runswick-Cole, wrote disparagingly about how the media often lost ‘ the opportunity to explore the social-political contexts of disability’.
This responsibility was not shirked in the opening episode of Rebecka Martinsson: Arctic Murders, a Scandinavian noir series, which was recently aired on More4. Written by Åsa Larsson it starts with the discovery of the corpse of Mildred Nilsson, a woman vicar. Described as ‘such an exhausting person’ by one of the characters, Mildred has been involved, for all his life, with Nalle Winsa, the DS son of one of her parishioners.
Rebecka, on seeing Nalle for the first time in years, comments that he has grown so big, to which his father, Lars-Gunnar Wiman replies, ‘Big, no, he’ll never be big’. A waitress in the diner declines an offer to look after him, explaining that ‘he can be difficult sometimes’.
Although viewers never see Nalle being anything other than co-operative they can also see that physically he is big. Broad-shouldered, and wearing a black motorbike helmet, he travels around the roads of the most northern part of Sweden on a quad bike. At the same time his behaviour is childlike, enjoying games of hide and seek and scoffing huge sundaes. Everyone in the community seems to be entirely accepting of him and respectful of his father’s efforts to raise him.
Apparently Nalle’s mother died some years ago and it took her husband, Lars-Gunnar, time to adjust. Temporarily Nalle went into a ‘bloody awful’ institution where he was very unhappy until his father, with the support of the Reverend Mildred, was able to take him home. The waitress explains that Lars-Gunnar ‘may seem hard but, in fact, pets Nalle like a kitten’. In one scene we see him collect his son from a baby-sitter and tenderly wake him before taking him home.
Nalle has a limp and he reveals that some months ago he shot himself in the leg with a hunting rifle. For this reason, although he still belongs to the local hunting club, he no longer participates in their expeditions. At the time Mildred spoke to Lars-Gunnar saying that she would report the shooting to the authorities unless Nalle went to live, in what she considers to be, a safer place. She has been in touch with an approved residential facility for people with special needs and is insisting on getting the application form filled in.
The vicar visited Lars-Gunnar at his home where, desperate and worried, he confronted her causing a fatal accident. In a panic he hid his culpability by stashing her body in the church, trying to make it look like she fell from the organ loft. When he is unmasked he justifies himself by saying that Nalle, who is ‘so sweet’ cannot look after himself and needs his father.
Knowing that now he faces a prison sentence the father raises his gun and shoots. Nalle, riding towards him on the quad bike, grinning and waving, is killed instantly and Lars-Gunnar turns the weapon on himself. The father chooses death for himself and his son rather than handing him over to residential carers.
The Swedish series, although fictional, asks an important question. What happens to DS people when their loving, nurturing parents get old or die? One answer is given by Helga Sol Olafsdottir. She suggests that the solution can be found whilst the embryo is in utero. A termination will prevent the problem arising.
Others, revolted by this idea, might expect that the costs of care should fall upon the state. Mildred, in Rebecka Martinsson, decided that Nalle should live with others whose needs are similar to his own. But Sweden is a rich country with well-funded social services. And even there Nalle would, his father says, be unhappy.
In The Archers in 2018, Bethany Tucker is rarely mentioned. She would now be five years old. Her father Mike, who was over 60 when she was born, struggled with the knowledge that he would be old by the time she reached the age of majority. On whom would the burden of care fall? Most of the discussion between characters focussed on this issue.
And so it becomes clear that the discourse of the Eighth referendum can include not only the pros and cons of abortion per se but also the accountability of our society to care for those who cannot look after themselves. The example of the case of ‘Grace’ shows us that we are not always managing that well.
Rebecka Martinsson: Arctic Murders. Dir. Fredrick Edfeldt. 2017. Yellow Bird. TV4 Sweden. Film pool Nord. Television.
The Archers. BBC Radio 4. 1951 – to present. Radio.
This blog was published on 20th May 2018.
On 25th May 2018 the Yes campaign won the Referendum on Reproductive Rights and the legalisation of terminations should follow swiftly. Let us hope that there will be no hate crime against those availing themselves of advice or support, or those giving it.