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Kate Talks // 22 SEPTEMBER 2020

Power for the People

Written by Kate Taylor 

She’s smart, she’s confident and she’s an advocate but more than that, Tania is an incredibly genuine, positive and likeable person.

To be fair, Tania has a brilliant sense of humour backing her up and recently, she also acquired some pretty cool technology to help her out too.

Usually, Tania is pretty hard to catch for a chat because she is so busy. But at the moment, COVID-19 restrictions have limited her passion for going to movies, the theatre, church and shopping.

“I have three nieces aged 11, 10 and 8. They send videos, but it’s not the same as being there together with them. The eight-year-old, she just gives the best hugs. You just feel the love. I really miss that. I miss all of their hugs. I miss hugging people. I’m a big hugger,” Tania explained.

About 12 years ago, Tania was diagnosed with Multiple Sclerosis, MS. She describes it as ‘mourning the death of her health’ but points out that she doesn’t mean that in a negative way, just in the kind of way that means she’s going to have her ups and her downs.

“Some people don’t understand what MS is and I like to explain it this way – if you look at a cord, the one coming out of your TV or anything, and it’s covered in plastic. That’s protecting it. But with MS, what the body does, it attacks itself. Every one of your nerves has a myelin sheath around it, so you end up with little holes in it, which means it damages it. So it’s like that plastic coating protecting the cord becomes damaged.

“So then if you think about it like a highway – but it’s got lots of road works on it. It’s got stop signs, and it’s got lanes closed. Some traffic is being directed down a one-way lane, and there’s traffic coming the other way. I like using analogies to help people understand.”

Last November, Tania moved into Specialist Disability Accommodation. It’s her own two-bedroom apartment, she pays rent and everything, and it’s set up to be… pretty much an accessibility wonderland.

Tania’s apartment is one of six SDAs in the nearly-50 that make up the Cheltenham apartment block and there’s also an apartment for Melba support staff to stay in as they provide 24/7 care.

“It’s all wheelchair accessible – there’s no island bench in the kitchen, so there’s room to move around and there’s also plenty of circulation space in my ensuite bathroom. I have an app and from it, I can turn the lights on and off, I can open and close the front door and my balcony door. I’m waiting on temperature control to be added, too.”

Combine it with her new wheelchair and it’s beyond even the best sci-fi movies.

“I got my new powerchair when I moved in here. It can elevate me so that I’m at the same height as the person I’m talking to. I can look them straight in the eye. I can talk to people without having to look up and that’s an amazing feature plus, I can reach up now and get things out of the cupboard.

“It also has a tilt function so if I’m reaching for something, it can tilt me forward 20 degrees. It can also tilt back, fully, so I’m laying down in it. It’s got the functionality of a gold class cinema seat.

“I didn’t really have time to test it out before COVID-19 hit so once it’s over, I’ll be sitting at the pub having lunch, reaching over the bar.”

Tania doesn’t want to mention the actual brand of the wheelchair though, because ‘that’s advertising and they should have to pay for that.” Meanwhile, Tania is also feeding back some of the minor flaws in the design of her apartment, it’s kind of continuous-improvement advocacy so that builders in the future can adjust them as they build new SDAs.

“In one of the bathrooms, there’s a niche and the tiles on it are too narrow and they’re on an angle… so things on it sit precariously on an angle. It’s funny to watch them. These are the little things that they really need to consider.” 

These things do sound little sometimes, but they are important. It’s important for builders to know that they are important. Still, Tania is incredibly realistic – she says herself that she isn’t expecting the Taj Mahal. She just wants things to work the best way possible for people.

Tania is one of the people who appeared in Melba’s submission to the current Disability Royal Commission. She’s also a member of ARROW, Melba’s (at the moment Melbourne-based) consumer representative group, advocating for Melba people.

She spoke a lot in the video about how community attitudes are, and how they can be changed.

“I said things like ‘just because I have a disability doesn’t mean I’m not a human being - so I deserve the same respect.’ 

The perception is that when you’re in a wheelchair, you can’t speak for yourself and you can’t do anything. Don’t treat us like idiots,” Tania said, with a laugh of course.

It’s that laugh that lets Tania use her ability to be funny to engage easily with people, creating more understanding in the community everywhere she goes. 

“I’d rather just laugh it off, treat it as a joke, and use that to open up a channel of communication with the person. It’s not always successful, but you know, sometimes it really works.”


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