The ethical debate around testing for Down’s syndrome has been simmering since the beginning of testing in the 1960s. It's back with a force, evoking strong feelings on both sides, as this year sees the NHS roll out a new completely non-interventionist prenatal test.

"Despite the fact that 92% of women will abort a foetus diagnosed with the condition, these women have chosen to continue their pregnancy."

The new test (NIPT) offers 99 percent accurate screening and carries no risk of miscarriage. Although not a diagnostic test, it will make detection of Down’s syndrome, Edward syndrome and Patau syndrome even easier. Some might say this is great news. Others say, the fact that many people see this as an advancement highlights a view in society that those born with Down’s syndrome are destined to be unhappy and that their lives worthless.

As we have witnessed in countries like Finland and Denmark, where they have universal screening, there is a 100 percent abortion rate. Testing seems likely to increase the number of terminations here. For me this is not a debate pro or against abortion or even testing, it is a debate about the society we are creating and the information we have to make these types of choices.

As a photographer and a mother of Ophir, a young woman with Down’s syndrome, I have over the years made imagery which aims to challenge out-dated attitudes and prejudice by creating an alternative representation. Collectively we have made great progress and people today with Down's syndrome experience greater social inclusion, longer life expectancy and better living conditions. It’s so strange that, even as our attitudes change, termination is on the increase; this suggests the influence of testing.

Mass screening is not universal

In the course of preparing for a forthcoming group photographic exhibition, I had the opportunity to speak with Kazuhiro Takemura, former head of international relations at the Japan Down Syndrome Society and father of a daughter with Down’s syndrome. He notes that in Japan, mass screening does not take place and feels that more education is needed to raise awareness about people with Down’s syndrome.

The Japan Down Syndrome Society is working to ensure that testing includes peer counselling, so expectant mothers can make informed choices. “To increase the level of social awareness in Japan, we are working on many initiatives including “Buddy Walk” which I introduced from the U.S. a few years ago,” says Kazuhiro Takemura.

I have often been asked 'if I knew…' and I have privately wondered what I might have done faced with a positive result. Considering the complexity of these issues led me to find women faced with this decision and explore how they made their choices. My series 'Safe Haven' is a series of portraits of pregnant women who know their baby will be born with Down’s syndrome. Despite the fact that 92% of women will abort a foetus diagnosed with the condition, these women have chosen to continue their pregnancy.

Every experience is unique

While each woman's story is unique to them and their life experiences, all of them came to an understanding that having an intellectual disability wasn't a good enough reason for termination. They shared a belief in an inclusive society and an acceptance of human difference. They sought information, talked with families and were now very excited to meet their babies. These women are not religious or pro-life, they are pro-choice, simply embracing the new challenge that faces them.

Fiona Yaron-Field’s ‘Safe Haven’ will feature in ‘Positive Energies’, a group exhibition with Fumio Nabata and Richard Bailey at OXO Tower 16 – 20 May 2018. In tandem with the exhibition, the Japan Society has organised a special evening event with the photographers, as well as parents and teachers, in order to explore the issues raised by the exhibition and the question of social inclusion of children with disability.

 

  • Positive Energies
    17 May 2018, 6.30 pm,
    The Swedenborg Society
    20-21 Bloomsbury Way (Hall entrance on Barter St)
    London WC1A 2TH
    Free – booking recommended
    https://www.japansociety.org.uk/event/positive-energies/
  • Fiona Yaron-Field is an artist and psychotherapist. She has participated in symposiums, publications and international exhibitions. Author of 'Up Close, a Mother's View' (Bunker Hill Publishing). In her book she describes, through image and text, her relationship with her daughter Ophir who has Down's Syndrome. www.fionayaronfield.co.uk
  • Further reading on maternity, testing and Down's Syndrome: http://www.maternityandmidwifery.co.uk/non-invasive-prenatal-test-views-people-syndrome/969/
  • Richard Hastings, Professor in the Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick R.Hastings@warwick.ac.uk