We’re thrilled with news this week that medical professionals delivering a diagnosis of Down syndrome to pregnant women have been instructed to steer clear of negative language.
Launceston woman Rebecca Kelly, whose four-year-old son Ryan has Down syndrome, made a complaint to Tasmania’s Anti-Discrimination Commissioner about negative language such as ‘risk’, and its potential to sway women into having an abortion.
“[Women] are often given the diagnosis in negative terms, so first of all talking about ‘a risk’ — ‘I’m sorry, I have some bad news, the results are back and there’s a high risk’,” Ms Kelly told the ABC.
“We don’t talk about the risk of winning Lotto, we talk about the risk of people dying of cancer. Risk is inherently associated with bad outcomes.
“‘Risk’ sends a message that Down syndrome in itself – and intellectual disability more generally – is a really negative thing and it reinforces these really outdated concepts around disability.”
Tasmania’s Anti-Discrimination Commissioner’s finding that negative language used in Down syndrome diagnosis could indeed breach the Anti-Discrimination Act, has prompted a change in the national guidelines to prenatal testing, advising more neutral language like “chance” and “probability”.
Ms Kelly was pleased with the result but said there would need to be a concerted effort to implement the changes.
“We would like to see training, we would like to see standards, and a much clearer complaints process when those standards aren’t adhered to,” she said.
What is Down syndrome?
Down syndrome is a genetic condition. It is not an illness or disease.
Our bodies are made up of millions of cells. In each cell there are 46 chromosomes. The DNA in our chromosomes determines how we develop. Down syndrome is caused when there is an extra chromosome. People with Down syndrome have 47 chromosomes in their cells instead of 46. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21.
Many people with Down syndrome live full and fulfilling lives. Veronica is one mother who speaks with love and passion about the richness that was welcomed into her family’s life when her son Jimmy, who has Down syndrome, was born.
“Because of Jimmy, our life is richer, clearer, fuller, and we now see through different eyes… what we thought would be a burden has turned into a blessing,” she says. Veronica, Jimmy and their family’s positive story of living with Down syndrome features in one of our ads. Watch and read their story HERE, and don’t forget to share so that by increments we can dispel the myth that a life with Down syndrome is somehow less valuable.