NDIS

Guest speaker: Chantel Bongiovanni

Chantel Bongiovanni

Chantel Bongiovanni is a writer who has contributed to anthologies about disability. She is also a Powerchair athlete, and has competed at a club, national and international level.

Currently completing her PhD in Applied Linguistics, Chantel has a passion for studying the experiences of others with disabilities as well as sharing her own.

Chantel has a number of passions that have contributed to who she is and her experiences so far in life.

Watch the full interview here!

Could you tell us a bit about yourself?

My name is Chantel Bongiovanni I have been involved in disability and advocacy type stuff for probably the last five to six years – in all different kinds of ways.

I am a person with disability, I am a wheelchair user and I am also undertaking a PhD in the area of policy and how people with disability experience policies for inclusion. So I think for me, and with my kind of background, I just have this interest in people with disability and their lives and I try to bring a lot of my own interests and the sort of things that I do with my life into that kind of sphere.

I’m also involved in powerchair sport, I do some creative writing and I feel like all of those different areas have some aspect of bringing understanding to the lives of people with disability up to a more broader audience.

Can you tell us more about your study as a PhD student?

My PhD is in applied linguistics and it has a sort of narrative focus – so basically, I’m interested in people’s stories and how people tell stories.

My PhD is looking at how people with disability experience policies for inclusion in education settings. So essentially I’m looking at the way that people tell stories of inclusion and what those kinds of experiences can tell you about the kind of life that they’re living in broader Australian society.

It looks at how they see themselves as people with disability and how they perceive their own bodies as disabled. I’m exploring how that is then translated into policy and how inclusion navigates this very complex human experience into everyday life.

What made you focus on this area?

I think that this kind of focus especially the focus on inclusion and how a person with disability experiences inclusion really just came from my own experiences as a young person with disability.

As I was growing up, as I was going through high school and even as a young adult I just sort of I kept seeing this dissonance between my own experiences of being a person with disability and then the way that I saw other people living. I felt like there was this disconnect where no matter what I did I was always a person with disability, but I didn’t feel like that always translated into mainstream society.

I myself knew that I had disability and I was really proud of that but I didn’t always see that translate into everyday life. Sometimes when I was becoming “included”, I felt like there was a bit of a fall away of that sort of strong disabled identity. I felt like no matter what I did I never quite knew how to be like, no I am a disabled person, I am a person with disability.

I do have these experiences that are very real and very much my own and how do I navigate in the world when I’ve got those unique experiences? Like how do I be in this world? I think that I was sort of asking myself those kind of questions and then it naturally flowed into the work that I’m doing now.

What are some common themes in the work that you do now?

Yeah, so one theme I definitely find is around human rights legislation and discrimination legislation for people with disability – we’ve got a lot of policies that are designed to enshrine the human rights of people with disability and increase opportunities.

But what I find, and what I’ve especially found in my research, is that even though people with disability know that they have rights like everybody else and that anti-discrimination legislation exists, that doesn’t mean that they necessarily talk about themselves (or the way that people perceive them) without having any of those traditional negative connotations about disability.

Negative connotations might be something like shame or pity, or feeling a sort of burdening. I’ve found that like even though all of the human rights are there, those older ideas about disability that society kind of imposed on people with disability hasn’t necessarily fallen away from the way in which people with disability perceive themselves and the way they feel that other people perceive them in their everyday life.

What is your perception of how disability is portrayed in the media and what impact did this have on you growing up?

I think one thing that can be interesting is this idea that when there is someone with a disability they can often be defined as that. There’s often a lot of other things that make them who they are but I definitely found growing up and watching and consuming a lot of mainstream media that I didn’t actually see a lot of people with with disability ever featured.

And when they did it was often in these cases of oh that’s the person in the wheelchair, or oh that’s the vision impaired person…you never really saw them in a bigger context of their lives.

I think that a disability can be a huge part of someone’s identity but there’s also someone who has a lot of other things – it’s like your disability is a part of you but you’re also a person in your own right and I think that that is something that I didn’t actually see translated a lot in in mainstream media.

That was something that really got me thinking as well because when I’ve reflected back as an adult I think I only knew of a handful (if that) of people with disability in any books that I read or tv shows that I watched. I would cling really tightly to any of those characters, even if they weren’t particularly well portrayed, just because I had nothing else as a reference point by which to go by.

Do you have any advice for those applying for the NDIS?

Something that I definitely experienced myself when I first started on the NDIS but also something that I see a lot of new participants go through is just that there is so much information out there and it’s actually difficult to know how to even get started.

It’s such a big scheme and it’s it’s hard to know how to even get going! I think something that I would definitely advise people to do is to take some time and seek advice and support from organisations or advocates – whoever it may be that might be able to give you some resources or some knowledge about how to do things within the NDIS.

There is a lot of information out there and it’s very easy to get bogged down in it. It can be quite overwhelming. I know in my own experience I definitely found that I started out maybe not seeking out a lot of resources or support and I found that it was actually hard for me to know even just the way things worked and why things were happening in a certain way.

It was hard to know what I could do as an active NDIS participant to steer my course in terms of plan reviews or connecting with services and support and it’s really only been through that trial and error that I’ve realised that if I’d had a bit of time to collect knowledge and connect early on I might have been able to transition a lot more easily.

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What are your hobbies outside of work and study?

Outside of my PhD and other work that I do I’m very involved in the powerchair sport community. I play powerchair football and powerchair hockey.

Basically powerchair sports are sports played in power wheelchairs and played by people who use powered or electric wheelchairs in their day-to-day life.

I have been involved in that community now for over 10 years and it’s actually it’s been a really positive thing in my life. One, you get to participate in sport (I wasn’t a very sporty person before I started playing) but I think the thing that actually got me involved was the community and I think I was really aching for a community to connect with and a community to be a part of. For me, the powerchairs really has been an amazing outlet for being able to meet people, being able to learn a lot more about disability and just sort of get to know people with similar life experiences.

I actually competed in the powerchair world championships in 2018 in Italy and that was not something that I would have ever imagined that I would be doing if you’d asked me that 10 or 11 years ago! It was an amazing experience and I think being in that international community and being part of something like that was just something huge that I’ll value forever.

What’s next for you?

In terms of what’s next for me is that I’m hoping to finish off my PhD. I do love writing and I love being in and doing things in the disability space and I kind of want to continue that. I’ve really been thinking about ways of bringing together my interest in writing with disability and seeing how those two things can interconnect and all the things I could do with that.

I’m looking forward to finishing up my PhD, continuing with sport and just seeing where that can take me.

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