Down Syndrome Community Appeals Against Institutionalised Pre-natal Discrimination
The New Zealand Down Syndrome Association (NZDSA) urgently calls on the Government to invest in disability attitude training for health professionals.
A deeply disturbing article in the Sunday-Star Times yesterday clearly articulated and emphasised the traumatic discrimination many families experience during pre-natal screening tests, as well as the pressure to terminate their pregnancies by medical professionals.
In the story, one expectant mother explains that as she was heading into theatre to have her baby delivered by caesarean, she was asked if she would want the doctor to resuscitate her baby if it was required.
“The stories from these parents once again demonstrates how parents feel pressurised and that information is not presented in a balanced way, nor are expectant parents provided with up-to-date information about Down syndrome,” says NZDSA president Kim Porthouse.
Porthouse says that most health professionals have no first-hand experience of living with Down syndrome and may not even be aware of the unconscious bias they bring to conversations with expectant parents.
“Because they have never met any people with Down syndrome living amazingly full and rewarding lives, they often revert back to a clinical health discussion that presents a doomsday scenario of potential health risks that may never eventuate.
“The parents are in shock, and in many cases termination is presented as the only logical option before parents even have time to process all the information,” says Porthouse
The NZDSA has consistently called for the National Screening unit to invest into disability attitudinal training for health practitioners, as well as focused training on how to offer screening and share screening results in a non-directive manner and to provide accurate and up-to-date information on Down syndrome.
“We have been asking for this for many years, but it still has not happened. It such a sensitive moment so it is also important to offer expectant parents non-directive counselling to help them make their decision, but this is not available,” says the NZDSA president.
Porthouse says that people with Down syndrome are valued members of every community they live in, but for some reason medical professionals are determined to ignore the social aspects of the discussions.
“Down syndrome in itself should not be reason to terminate a pregnancy. The way a society thinks about people with disability underpins everything,” says Porthouse, who emphasises that the NZDSA is not challenging a woman’s right to make her own decision, “but we just want them to be able to make a fully informed decision”.
The discrimination and stigma in society does not stop once the baby is born, judging by the recent experiences of Bridie Allen, parent of two-year-old Sienna.
“After the birth of my daughter, some people asked if I didn’t get the screening, as if there had been some mistake,” says Allen.
Porthouse says that this type of question confirms the discriminatory assumption by many in our society that expectant parents would terminate.
“And let’s not forgot how hurtful this unconscious bias in society must be to people with Down syndrome, who are told that their lives don’t really matter,” says Porthouse.
Vincenzo Vaccarino is a young man with Down syndrome from Palmerston North and he says the pre-natal screening discussions make him feel “very bad and uncomfortable”.
“It makes me feel very sad to hear that parents choose not to have babies with Down Syndrome,” says Vincenzo, who married his girlfriend Rachel two years ago.
“I think it is cruel. People should consider the rights of people with Down Syndrome, we have the same human right to live, like every other person.”