Maryam Madani talks to parents of children with Down syndrome to investigate some of the reasons why women might choose or not choose to give birth.
One prominent pro-life argument focuses on the rates of termination upon prenatal diagnosis of Down Syndrome. The numbers reach 90% in England (according to the latest reports by the National Down Syndrome Cytogenetic Register) with similar rates in Denmark and Iceland. However, there has been some debate about these statistics which, although accurate, may not show the full picture – for example, these figures do not take into account the number of women who choose to continue their pregnancy without taking the screening, which is 15-20% of women in Iceland, and 26% in England- this still amounts to a lot of babies (around 700 live births with DS in England annually).
Also it is unlikely that women will be able to screen out Down’s syndrome in Ireland, as feared. NIPT it is the only screening which offers results within the proposed 12 weeks for abortion, and is currently available in Ireland and offered by the NHS. However, it only shows whether there is a “high” or “low” risk for the offspring contracting Down’s, and it is recommended to follow with CVS or amniocentesis, which would only yield results well after the first 12 weeks. To get their 90% stats, the NDSCR used the gestation period from which CVS and amnio were taken and not screenings that only gave a risk.
At the core of these claims, however, and what gives them their emotional power, is the implication that the majority of women would choose not to have a child with an intellectual disability.
To the disabled person or activist who is worried about the depths of prejudice in our society, that statement can be a cause of concern. If women are afraid to bring a child with an intellectual disability into this world, we need to look at why and what it is about this world that needs to change.
For Deirdre (real name changed), one of the biggest challenges she has had to face came after the birth of her son. It was not his Down Syndrome itself that was the issue – but rather, the fact that it threw this atheist feminist into the 1950s, into a world of services and institutions where that “Holy Catholic Ireland, still lives on”.
“The path that was laid out for him was so horrible,” she said. All around her, people were making decisions for how their life should be: “He was really lovely, but it was all of this future that people were projecting on to him … and I thought it was rubbish, I still think that life that was described was rubbish.”
Frank Conaty, whose son has an intellectual disability, noted that “something that is not often discussed or looked at” is “fear”- “there is a fear that surrounds a diagnosis of intellectual disability, and that is understandable.” As a parent he has had “to struggle and fight at every corner, at every junction, at every stage of development, for services, for supports.”
“That’s the world that you end up in when you have a child who was born with an intellectual disability, and it is a frightening place. At diagnosis, you’re invariably going to have playing into your subconscious the bereavement at the loss of the child that you thought you were going to have coupled with what you understand to be a very difficult world.”
“I don’t think it’s simply a political point about the abortion debate, I think it’s the entire complex world that we have surrounding disability.”
There is also added financial burden. State services weren’t providing speech therapy, though Down Syndrome Ireland went some way to subsidise it, so Deirdre was faced with a very difficult decision to get that support for her son: “I sold our home to pay for speech therapy for him … I got a hundred thousand euros and I spent it and I would do it again and again … but I believe it shouldn’t have been me having to do it.
“It is considered ok to leave a person with DS waiting for a therapist; there is no part of any system that thinks that that’s essential. It’s really shocking.”
In Ireland, nearly 20,000 of our intellectually disabled people need new or enhanced supports, and it is clear that they are bizarrely sectioned off from the rest of society. We are “congratulating ourselves for not keeping them in cages anymore”, says Deirdre. She believes that to banish prejudice, “the number one thing is education” and “integration” into mainstream schools, starting from preschool. Most children with DS are more than capable of it, if teachers were given some training to support and include them.
The “medical” rather than the “social” model of disability is entrenched in our societal structures. In the former, a disability is seen as an abnormality that should be treated: doctors congratulate a mother on the results of their child being ‘healthy’, or of ‘normal’ development. In the more progressive social model, there is nothing inherently wrong with the disabled person, but rather the person becomes disabled by a world not designed to accommodate their needs.
Does the way a diagnosis is delivered unnecessarily add to the “fear” or limit vision of potential for parents to an intellectually disabled child? Some people think so.
Kate Potter of the Down Syndrome Association in England told us that their “Tell it Right, Start it Right” Campaign was set up in 2010 “in response to a survey of parents that we conducted that was itself in response to increasing numbers of calls to our helpline from parents distressed and concerned by the way they had been told the news of their child’s diagnosis, both prenatally and after birth.” Their program aims to train medical professionals delivering a diagnosis of Down syndrome, to do so in an empathetic way and with up to date information provided in an unbiased way on the life prospects of people with Down syndrome, the joys and challenges of having a child with Down Syndrome and the support available in the community. Informing Families does similar work in Ireland.
Louise Nolan, whose son Liam was diagnosed with DS after birth, said: “The social worker kept saying how very sorry she was – it was just ridiculous. For me, I knew I had a lot to deal with but I was very happy to have my baby and he was breathing and there was no serious crisis, it wasn’t the end of the world. I was just very delighted to be a mum, and I had midwives coming up to me and going ‘you need to have a cry’. As far as they were concerned I wasn’t going through the typical emotional phases that I should do, that I should be grieving or something. But it wasn’t that way for me.”
She didn’t have any expectations or particular vision for how her life or child would be, so she didn’t experience the typical grief. She is lucky that things turned out well- her son is relatively healthy and like Deirdre’s son is integrated into mainstream school. “Yes, life is going to be more challenging from the outset when you have a child with a disability, no matter what the disability is, but the reality is also people’s ability to cope, in whatever circumstances life throws at them, is amazing. There is no one size fits all.”