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

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

A staff member spoke directly to her, rather than to Moana.

Vinny has Moebius syndrome, a neurological condition that shares some similarities with Down syndrome but is considerably rarer.

And while Moana, who has been her primary carer for the past 13 years, takes Vinny with her everywhere she goes, that doesn’t mean Vinny is always made to feel 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 along she went 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 directly to her, engaged in direct eye contact, and completed the transaction with her.

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

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

Now, Moana wants to spread the message that more places could take a leaf out of the NGV’s book.

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

“But there are places on the right track.

“Vinny actually told me that she had already been to the NGV with her day program and that speaks volumes to me as a venue, that that’s somewhere they choose to go.”

To backtrack a little, how does Moebius syndrome affect Vinny’s everyday life?

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

“She’s still developing; for example, in the last year and a bit we’ve taught her how to brush her teeth.

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

“She’s still gaining basic life skills that someone like myself, I guess, would take for granted.

“She still needs 24/7 care and things cooked for her, but in saying that, she’s excelled.

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

Vinny loves to go swimming, to the movies, and 10-pin bowling, and Moana often takes her out to breakfast, cafes, restaurants, even nightclubs.

But recently, Vinny’s been going through a phase of feeling she is definitely treated differently by others.

“Vinny’s going through a stage of her life where a little bit of her feels like she doesn’t belong,” Moana says.

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

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

At its core, this is what inclusivity means.

It’s not necessarily about “targeting” or “singling out” people with special needs.

Rather, it’s about making them feel they are an important, welcome, equal, and cared-about part of the world they live in.

“That’s the way we were raised and we have never treated her any different,” Moana says.

“I try to make sure I do everything with her that I can, and I just love seeing her when she feels she’s just like anyone else, where she’s not treated differently.

“I think she can feel, now, when she’s being treated differently, and I just don’t think she likes it.”

So what would Moana’s message be to any businesses out there that want to do more, but perhaps don’t know where to start?

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

“It’s kind of – just create a workplace that’s inviting for all.

“It’s so simple to do a little bit of training in customer service; just to upskill people is really important.”

And those little changes don’t have to cost a lot of money to implement, either.

“Again, it can be as simple as talking directly to the customer, and if the customer isn’t giving a response, then potentially that’s when you let the family member or carer check in,” Moana says.

“It’s about having that workplace that’s thinking about everyone.

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

“If you’d seen Vinny’s face when the lady (at the NGV) spoke to her, you’d know how big a difference this makes, by just making some simple little changes to be more inclusive.”

The visit to the NGV isn’t Vinny’s only invitation to check out major tourist destinations for their levels of accessibility and inclusivity.

Soon, she will have the “absolute privilege” of going to Phillip Island, also at the behest of Tourism Australia.

“She gets to see the penguin march as part of that and she is so excited,” Moana says, laughing.

“She’s literally hounding me every day to go.”

SOURCE: 7NEWS