News

Fraser Coast mum fighting for her daughter's rights

Josee and Joelle Kelly.
Josee and Joelle Kelly. (c) Amy Pace

ONE day, Fraser Coast mum Joelle Kelly knows her daughter Josee might tell her she wants to have a baby.

Normally this wouldn't be a big deal for any parent, but for Joelle and her husband Lewis, the conversation might be a little different than most.

Their daughter has Down syndrome and they are two of thousands of parents across the country who are confronting what love and procreation means when it comes to people who are differently abled.

Josee is three-years-old and Joelle says it will likely be 20 years before they have to think about it, and when they do, they'll 'cross that bridge when we come to it'," she says.

But a recent episode of Australian Story, which shared the dreams of a young couple who have Down syndrome and their desire to become parents, has sparked a huge amount of debate, some of which had been positive and some of which had been negative, Joelle said.

Joelle has been heartened to see people comment who recognise that people who are differently abled have the same rights as everyone else, but has been concerned by other comments, which call for sterilisation to prevent pregnancy, something Joelle says is abhorrent and went out of practice decades ago.

"It was sad to read some of the 'against' comments," she said.

The couple in question, Michael Cox and Taylor Anderton, have been dating for two years and are engaged.

Their parents say they are happy the two have found happiness together but cannot support their dream of having a family, although in other interviews they have said they would support their children's choices.

Joelle said she understood the issue was a delicate and challenging one, but hoped it was one people would be able to discuss without discriminating against differently abled people.

Joelle said while it wasn't necessarily common, the couple were not the first people with Down syndrome to want to get married.

"It is not a new thing," she said.

Joelle said many of the criticisms aimed at people with Down syndrome - that they wouldn't be able to financially care for a baby or take care of its needs - could easily be levelled at neuro-typical people, but often weren't.

"Some people have no idea of what a person with Down syndrome is capable of," she said.

A strong advocate for her daughter and other differently abled people, Joelle also weighed in on increased genetic screening, which could see a corresponding increase in terminations of babies diagnosed with Down syndrome.

Currently, 95% of Australian couples who receive a diagnosis of Down syndrome opt for abortion.

Joelle said she had two concerns - the fact that $108<TH>million was being spent on testing what would probably identify an extra 100 babies who had the syndrome and that women were not being properly informed before making a choice as to whether or not to terminate.

Joelle said at the moment women seemed to be having extremely negative experiences after receiving a diagnosis, including being pushed towards having a termination or not supplied with enough information in order to make an informed choice.

Joelle is fighting for guidelines to be established that would require a diagnosis to be given in a neutral manner and would see mums facing a difficult choice, being given the support and information they needed to make the best one for themselves and their family.

She said she has heard of women being booked in for invasive testing and terminations before they asked for it. Joelle herself opted for chorionic villus sampling and said she was all in favour of further testing - if that was what the mother wanted.

She said she received constant pressure from medical professionals to decide to terminate up until she was more than 20 weeks pregnant with Josee.

Joelle said the pressure women experienced made a difficult time even more traumatic.
 

Topics:  down syndrome fraser coast



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