AFLW star Moana Hope has been her sister’s carer for 13 years. This is what she wants to tell you

Recently, something that had literally never happened before happened to former AFLW star Moana Hope’s sister Vinny.

A staff member spoke directly to her and not to Moana.

Vinny has Möbius syndrome, a neurological disorder that has some similarities to Down syndrome but is much less common.

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And even though Moana, who has been her primary caregiver for 13 years, takes Vinny with her everywhere, that doesn’t mean Vinny always feels included by others.

However, Moana recently took to Instagram to share a special experience Vinny had at the NGV International in Melbourne.

Tourism Australia had invited Vinny to the art gallery to see how inclusive and accessible it felt for her, so she went along with Moana and her young daughter Svea.

In a video, Moana explained how Vinny walked up to the counter with a candle she wanted to buy – and for the first time, someone in customer service spoke to her directly, made direct eye contact and completed the transaction with her.

“People will always come to me and say, ‘Is this all you want?’ instead of asking Vinny,” Moana tells 7Life.

“It was funny, Vinny got really shy when she bought the candle because it was a really lovely moment for her.

“She was like, ‘Yeah, I’ll pay for that!’ I’m being served!’

“And that’s never happened before, so it was really nice.”

Now Moana wants to spread the message that more places could be an example of NGV.

“We still need a lot of work,” she says, when it comes to caring for people with special needs.

“But there are places that are on the right track.

“Vinny actually told me that she had already been to the NGV with her daytime program and that speaks volumes to me as a venue that they chose to go there.”

Going back a little, how does Moebius Syndrome affect Vinny’s everyday life?

“The way I explain it is that she’s basically 30 but has the developmental ability of a child,” Moana says.

“She’s still developing; For example, last year we taught her a little about brushing her teeth.

“It takes a long time; it took five years to teach her how to dress and about three years to teach her how to go to the toilet.

“She is still learning basic life skills that someone like me would probably take for granted.

“She still needs around-the-clock care and something cooked for her, but when she says that, she excels.

“(Doctors) never thought she would be where she is today.”

Vinny loves swimming, going to the movies and playing bowling, and Moana often goes out to breakfast with her, to cafes, restaurants and even nightclubs.

But recently, Vinny has been going through a phase where she feels like she’s definitely being treated differently by others.

“Vinny is going through a phase in her life where a small part of her feels like she doesn’t belong,” Moana says.

“So for Tourism Australia to reach out and say, ‘Hey Vinny, we’d love for you to go out and experience this and look at the accessibility behind it’ – that’s a really nice and cool thing that they’re doing.”

The most important thing for Vinny, Moana explains, is being able to go to places where she feels “part of it.”

At its core, this is what inclusivity means.

It is not necessarily about “targeting” or “segregating” people with special needs.

Rather, it is about making them feel like they are an important, welcome, equal and caring part of the world in which they live.

“That’s how we were raised and we never treated her any differently,” says Moana.

“I try to make sure I do everything I can with her and I just love seeing her when she feels like she’s just like everyone else and isn’t treated any differently.

“I think she feels now that she’s being treated differently and I think she just doesn’t like it.”

So what would be Moana’s message to all the companies out there who want to do more but maybe don’t know where to start?

“I don’t get mad or anything — it’s just education,” Moana says of Vinny’s experiences when she goes out.

“It’s kind of like – just create a workplace that’s welcoming to everyone.

“It’s so easy to do a little customer service training; It’s really important to develop people’s skills.”

And implementing these small changes doesn’t have to cost a lot of money.

“Again, it can be as simple as speaking to the customer directly, and if the customer doesn’t respond, maybe leave that to the family member or carer to reach out,” says Moana.

“It’s about having a workplace that thinks about everyone.

“Is this location accessible to someone in a wheelchair? Are there steps?

“If you had seen Vinny’s face when the lady (at the NGV) spoke to her, you would know what a big difference it makes by making just a few simple little changes to be more inclusive.”

Visiting the NGV is not Vinny’s only invitation to examine key tourist destinations for their accessibility and inclusivity.

She will soon have the “absolute privilege” of traveling to Phillip Island, also at the behest of Tourism Australia.

“She sees the penguin marching and is so excited,” says Moana, laughing.

“She literally pushes me to go every day.”

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