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Families Say 'Nice' Names For People With Down Syndrome Are 'Misguided'

A recent Reddit threat highlighted the different names countries use for people with Down syndrome, however, those born with the genetic disorder say their name should be up to them.

In Japan, the word Himawari (meaning sunflower) is sometimes used to refer to people who are born with Down syndrome.

Melekler, meaning 'angels' in Turkish, is also used.

In Finland, Germany, Russia and Norway those with the genetic disorder are called 'children of the sun' or 'sunshine kids' (sonnenscheinkinder) and in Italy, they're sometimes called 'pure'.

In some countries, the nicknames are more negative.

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In Australia, there are more than 13,000 people living with Down syndrome, a condition where babies are born an extra chromosome.

One in 700 children is born with the condition across the globe.

It is often characterised by some level of intellectual disability, some characteristic facial features, and health and development challenges.

Most people in Australia refer to the condition as Down syndrome.

But a viral post on Reddit recently raised the question of what do those who live with the disorder want to be called?

The post saw dozens of people from all corners of the globe sharing what their country commonly calls the condition.

Many commenters on the post praised the use of positive colloquial phrases, but the families of Australians living with the disorder say even the nice ones can lead to more stigma.

Don't Call Me Sunflower...

Tom Amerina is a 30-year-old man living with Down syndrome.

He lives by himself in Melbourne with the assistance of support workers, after moving out of his parents' home in Queensland three years ago.

Tom Amerina lives on his own in his favourite city, Melbourne. Image: Supplied.

Amerina told 10 daily how much he enjoyed living on his own and spending time with his friends at a local social group for others with different abilities, called Club 21.

He wants people to know that he is no different from anyone else, and just because he has Down syndrome, he still likes all the same things.

"We're a little bit different, but I'm going to be just fine," Amerina said.

His mum Marie still lives in Queensland and said that while it was tough to see him move interstate, the family was grateful Amerina was part of a program that developed his skills and independence before he was ready to move out on his own.

Tom with his mum Marie. Image: Supplied

She said being independent and back in his favourite city meant Amerina could take on a few part-time jobs including at a Woolworths and as a writer.

Marie told 10 daily she believes using other phrases like 'angel' or 'happy people' doesn't help to change the attitude towards people with different abilities and could take away their individuality.

Just because they've got the same disability doesn't mean they're all the same.

"[Tom] is an individual who happens to have down syndrome. He's living life to the fullest like all other people."

Eight-year-old Max from Sydney is a child who also happens to have Down syndrome.

His mum Natalie Stuart said having Down syndrome is a very small part of who Max is as a person.

"He's not a down syndrome boy, he's just a boy who happens to have Down syndrome," Stuart told 10 daily.

Stuart believes using phrases such as 'angel' or 'sunflower' isn't helpful when it comes to changing the way people act with kids and adults who have the disorder.

Natalie and Max. Image: Supplied

"One of the things that I found most offensive immediately was any of the terms that people would use for people with Down syndrome ... you know like 'Downsy'," she said.

"That really made the hair on my back stand up and it still does."

While society has come a long way to accept people with different abilities, Stuart said Australia can do better when it comes to making everyone feel included.

She said she found expressions that bring up negative emotions when talking about Down syndrome began for her as early as pregnancy.

"They tell you you've got a high risk of having a child with Down syndrome.

"Just that word 'risk' automatically bubbles up emotions of something negative," she said.

"Whereas if you're told you've got a 'high chance', that automatically creates a different feeling in your body."

Don't Separate 

Next year, Max will start Year 3 at a new school on the NSW Central Coast. It's the first time he will be in a mainstream school.

Stuart said Max, who has been attending school one day a week this term to get acquainted, has already made friends.

However, she said there is an existing stigma in the education system where schools believe segregating children with different abilities will be better for them.

She said Max is beginning to recognise when people treat him differently and he often gets upset when other parents tell their children to stay away from him in the playground.

"It breaks my heart because it's sad that that's what that child is being taught," Stuart said.

But Tom's mum Marie said the decision to separate children with down syndrome from mainstream schools should be considered on a case by case basis.

Marie said while Tom did really well at his mainstream school and other students were nice to him, he didn't come out with any friends and believes if he had been to a school that was specifically for people with different abilities, that may have been different.

Madeline Stuart, 21, is using her fame as the first professional model with Down syndrome to fight for inclusiveness and diversity in the fashion world.

Her mother Rosanne said that while Madeline isn't too fussed about how people refer to her (as a model with Down syndrome), there was still a lot of stigma attached to the name.

Rosanne doesn't want to hear the term 'special needs' anymore.

"We don't want them to be referred to as sunflowers or angels or any of those ridiculous words," she told 10 daily.

"We want them referred to as people with Down syndrome and we don't want them to have a stigma attached to it."

Rosanne said the phrase "different ability" is also preferred. She would like to get rid of the word 'disability' entirely from language.

"We would like to stop thinking of the word Down syndrome as a dirty word," she said.

People with Down syndrome give more to the world than people with it They give us humanity and colour.

Since skyrocketing to fame in 2015, Madeline has become an increasingly prominent face in the industry and now has modelling engagements all over the world.

But according to new research from Mable, an online platform that connects differently-abled people with support workers, 98 per cent of people living with a disability say they want better representation in the media.

According to the study, business, music, film and news all rated poorly when it came to how they represent people who are living with disabilities.

The research was released to coincide with International Day Of People With Disability.

Mable CEO and co-founder Peter Scutt said 87 per cent of people surveyed wished those living without a disability knew how to better interact with them.

Simply being mindful of language can make a huge difference. Using specific words and terminology can create a sense of empowerment, pride, identity and purpose.

Natalie Stuart said she felt there's still a long way to go.

However, she said she was encouraged by recent performances such as Stevie Payne and Gryffin Morrison in the movie Ride Like A Girl.

Ultimately she hoped to see a world where children can grow up and experience life with people of all abilities, without 'special' names.

"I'm hoping that someone won't need a special name for someone with Down syndrome," she said.

"Instead, they'll just say: 'That's Max, he was in my class at school."

Contact the author: vgerova@networkten.com.au