When the urge to 'protect' a child is really a judgement

Jackie Macedo and her three-year-old son Noah.

Jackie Macedo and her three-year-old son Noah. Photo: @jackiemsydney

Babies are magnets.

Everyone wants to talk and touch, and usually the lucky parent is bathed in adulation.

Unless your baby has a visible disability.

Jackie Macedo's son Noah.

Jackie Macedo's son Noah. Photo: @jackiemsydney

Jackie Macedo has a three-year-old son Noah who has Down syndrome. Every week, the Malaysian food entrepreneur took her son with her while she ran her much-loved food stall at a local Sydney market. He played happily in his playpen while she dealt with customers.

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But last week she quit the markets after more than a decade when she discovered someone had been critical of her son's presence, and was about to lodge an official complaint – and that the process to stop her bringing her son had been going on for a month with no consultation.

Macedo was shocked. But she says it's not the first time she's had to fight for the right of her son to be treated in the same way as other kids. And she says people often couch their negative feelings about Noah to make it look like they have his best interests at heart.

"A lot of the discrimination is couched in political correctness, in people being overly protective of his condition," she says. It also applies to her, she says – people feign concern at the way she manages her work as a chef and her life as a single mother of a child with Down syndrome.

It's part of what is often described as courtesy stigma – the way people treat those who are related to someone who bears a stigma, such as a disability; and was first highlighted by Erving Goffman in 1963. It's not just the intrusive inquires or the staring and pointing, it's also the kinds of devaluing remarks that strangers and even friends make. And, of course, social withdrawal.

It's public disapproval wrought on those who are doing the best they can to make sure their kids are having the best lives possible.

And you'd be hard pressed to imagine that kind of behaviour from your local GP. Stephanie Gotlib, the chief executive officer of Australia's peak body Children With Disability, has four children, two of whom have a disability.

She visited a new doctor with one of her sons – and the doctor was critical of her son's noise-making. He told Gotlib: "I can't concentrate."

There are so many parents who might feel humiliated by that kind of experience – but Gotlib, with a long history of working in the disability sector, was not going to take a backward step. She took it straight to the practice manager and said it ended up with a positive resolution, not just for her family, but for the way the practice learned to include children with disabilities.

"I counter such deeply entrenched prejudices... before I had my children, I had some prejudices myself and made some assumptions," says Gotlib. "But you have to call it for what it is."

For her, intrusive questions are not the worst kind of behaviour.

"That level of questioning doesn't have to be a bad thing... children are naturally interested in diversity."

"They might ask, 'How come your son doesn't talk very much?'," she said.

From that, she says, comes a positive conversation about differences.

And that's one of the many aims of CDA (which has 5000 members and represents children with a range of abilities), to "advocate for children and young people with disability for equal opportunities, participation and inclusion in the Australian community".

But Jackie Macedo hasn't had too many positive conversations about Noah. She says that even when she was pregnant, there was a fair bit of subtle pressure to terminate her pregnancy. After Noah was born and spent a lot of time in the intensive care unit for heart and bowel problems, one staff member told her he had never known a child like Noah to grow up to be a productive member of society.

"They were pretty dark days but I was determined he would never be a burden on society."

"I made a conscious decision to build my business to the point where one day, when he grows up, he is going to be envied."

As Australian sociologist David Gray wrote in 2002, the feeling of being stigmatised is "most commonly experienced in public situations... where the parents' competence is most likely to be judged and where the presence of a disabled child threatens the ability of parents to affect a presentation of family normality."

And he quotes one mother who said: "We went on a... camp and we were pretty apprehensive about going… We were the only ones with an autistic child and… he performed in front of all those people there and had to take charge. And he called me an idiot in front of all those people, and swearing started to come out, and everybody just freezes. Everybody is just embarrassed."

Jackie doesn't know who complained about her tiny son who plays in his cot and vocalises. He can't be any trouble because he can't walk – and he is not very loud.

But someone, somewhere, said Noah was impacting on their business, impacting their ability to trade effectively.

Now, that's the kind of attitude which really is embarrassing.