A Wheelie Good Chat

43. Stigma, Support & Speaking Up with Josef Bandera

Sam Cole

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Some conversations are polite. This one is useful.

I’m joined by Josef Bandera, a Perth-based author and disability advocate, to talk about what inclusion and disability rights actually look like in real life. Josef shares why he’s proud of his disability, how stigma still boxes people in, and why having a voice isn’t a bonus, it’s a basic right.

We get into the reality of support work, what makes a good support worker, what happens when workers are under-trained, and why consent matters, especially when social media comes into play.

We also talk participant choice, asking better questions when hiring support, and why support should align with the person, not the worker’s preferences.

And we don’t ignore accessibility, from footpath gradients to “accessible” spaces that miss the mark.

If you care about disability inclusion, the NDIS, or understanding what respectful support actually looks like, this conversation gives you something to take away.

Check out Josef’s work: Book | Instagram

Thanks so much for listening to A Wheelie Good Chat! Your support means the world.

Follow along on Instagram: @awheeliegoodchat | @sam.bamalama 

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Acknowledgement And Setting The Tone

Sam

I want to start this episode of A Wheelie Good Chat by acknowledging that I'm recording on Whadjuk Noongar country. I pay my respects to the Elders past, present and emerging. Always was. Always will be Aboriginal land. I'm your host, Sam Cole, and this is A Wheelie Good Chat, where I get real about life with a disability and everything in between. Yes, even the not so PG stuff. I live with a condition called dystonia, and I started this podcast to break stigma and share the things we, as a society, don't talk enough about. Today I'm joined by Josef, who is an author, advocate, and someone who is really passionate about inclusion, disability rights, and making sure people with disabilities have a voice. In this episode, we talk about his books, his experience living with a disability, the importance of good support workers. And some of the barriers that people with a disability still face in everyday life. We also chat about advocacy, accessibility and why it's so important for people to ask questions, speak up and be heard. So let's get into it. Thank you so much to Josef for joining me on this episode today. Hi, Josef. How are you going?

Josef

Good, Sam. It's good to be on here.

Sam

I really appreciate you reaching out to me and taking the time to you know, tell me briefly about yourself in the initial message.

Josef

Why I wanted to come on this podcast is I thought it looked inspirational. I think it is excellent that someone with a disability is doing something like this. I think it's actually quite emotional and beautiful.

Sam

Thank you. That's very nice to say that. Do you mind telling the listeners bit about yourself?

Josef

So I'm a young man with a disability, so I am based in Perth.

Sam

Mm-hmm.

Josef

I'm originally from the southwest of Western Australia, in Bunbury, so, yep. Grew up in the Southwest and I am a, you know, a passionate person.

Sam

Yeah, we love passion on this podcast.

Josef

I also feel there's a lot of changes in the NDIS and disability space currently happening, and a lot of global changes, um, with the current global crisis and what's going on in the world is affecting people with disabilities, with the current fuel price issues and you know, just other barriers that are happening in the global world. Which I think are affecting people with disabilities and there's been a lot of bad in the media with different things happening with disabilities and people with disabilities. Bad things have happened to them in regularly, not just in Western Australia, but Australia wide. I've noticed there has been a lot of changes and lot of issues with different things and injustices and stuff.

Support Workers Social Media And Consent

Sam

And so what kind of, things and injustice have you seen?

Josef

I saw a report the other day where support workers ill-trained and not trained in supporting people with disabilities. I see this happen all the time where there's participants left in terrible situations where they're left to, um, defend themselves'cause they've got incompetent support workers. And, you know, I've got a lot of good support workers and I know a lot of good people out there. And I've learned a lot from a lot of people and I think social media is one of the best things that have ever happened because I see a lot of people with disabilities blogging and talking about their lives, and I think that's brilliant. But there is also a boundary of where if they cannot understand. Some people believe it's a bit taking advantage of. I think if you are verbal and you have understanding of what's going on, if you don't understand what's going on and your support workers filming you, it may be a bit of a challenge.

Sam

So the consent around being on their social media and that, is that kind of like the conflict of what you're speaking of?

Josef

Yeah, the conflict of social media.'cause I know it comes up a lot in social media'cause I'm on TikTok and Facebook and stuff I see. Um, what goes on.

Sam

Have you ever been in that situation where you know a support worker was filming you and you felt uncomfortable? Or is it quite like a friendly relationship you have with your workers?

Josef

I have a friendly relationship with my workers.

Sam

That's really important to have, or I feel that's a really, valuable relationship to have, especially if you're seeing them quite regularly. You don't want just anyone coming into your life. You wanna have people who you feel safe with and, and you can actually see them outside your hours and they're someone who you would actually be friends with and can actually connect with on a deeper level, rather than just having someone just come and go in your life, if that makes sense.

Writing Books And Telling Stories

Josef

Exactly.

Sam

Yeah and I remember in your initial, message to me that you mentioned that you had written a couple of books.

Josef

I've written books on disability and disability rights. Yeah. They're both about inclusion, one's about, the deep diving into support workers, the good, the bad, and whatever else we support.

Sam

That's amazing. What inspired you to write those books initially?

Josef

What inspired me to write them was because I saw an opportunity for people with disabilities to tell their story. So I did that for an organisation called Book Incubator. Kate, she's a lady from the Southwest and she does like therapy to teach people. And you know, I wanted to tell my story and wanted to hear other people's stories. Yeah, it was a very interesting time.

Sam

What was the writing of the book process like for you?

Josef

It was a very good opportunity. Um, so I got people together. I started writing concepts about my book.

Sam

So you started off with like an idea that you had?

Josef

Yeah, so I wrote that on my iPad and then I sent it to get it edited and then the process of writing about,'cause there's things that I couldn't put in there because bad things have happened and other things.

Sam

So was that more for keeping yourself safe from the implications if you released it?

Josef

Yes.

Sam

Yeah. So that must have been quite tricky for you to not feel that you can leave everything in. There were certain things you had to take out.

Josef

Mm-hmm.

Sam

I'm sure the listeners would love to know where can people find your books?

Josef

The one that I advertise is Josef, so just J-O-S-E-F. And you can find it on Amazon and other, networks.

Sam

Beautiful. That's so good that you have a passion and you're following it through. And it also sounds as though you're very advocacy driven.

Josef

Yeah, I'm very advocacy driven.

Sam

What has your experiences been like living with a disability?

Josef

It's been challenging. There's a lot of stigma with people with disabilities.

Sam

Yeah. And what kind of?

Josef

Stigma with having a disability and, think people see people with disabilities as it, can be challenging.'Cause I think with disabilities, sometimes, you know you need extra support with stuff.

Sam

And so the stigma that you have felt was people putting you into a box.

Josef

Yes.

Sam

And that must be really hard for you

Josef

I feel very honored, like to have a disability. I feel honored.

Sam

Okay. Yeah. Do you mind telling me a bit more about that?

Josef

Because feel it's given me a lot of opportunities to advocate and to meet people, and wouldn't have met people like you, you know? And, I think we need people out there saying what they wanna say. I think a lot of people shut down, and I see this in agencies.

Sam

That's a really beautiful I guess way to frame it, that disability has given you this great opportunity and, you may have not written a book if you didn't have a disability and that kind of thing.

Josef

And I wouldn't have had the social opportunities that I've had, with my programs and I'm gonna shout them out.'cause I would like to, because there's few people in particularly that I would like to shout out. I don't wanna sound rude, but there's a few people I think would be good to acknowledge what they have done.

Sam

Of course. Absolutely.

Josef

I've got a few programs. Yeah.

Sam

And what are these programs?

Josef

I do social programs, so I've got a program called Lightbulb, which is a social program and I do social things.

Sam

Beautiful. And how often do you do that?

Josef

I do that once a week.

Sam

It's so good that you have that social aspect, meeting people and getting out and about. That's really important.

Josef

Yeah.

Sam

And so what kind of things do you do with them?

Josef

I do different social things with them, and do activities and stuff. I was only thinking about this, the other day like with them, they'll get the participants together and get them to choose the activities.

Sam

That's amazing. Okay. So it's not just the manager or whoever is creating the, the plan of what's gonna happen on that week. It's involved the participants, is that what you're called? Sorry.

Josef

Yeah,

Sam

Yeah. Okay. The participants are involved in what they wanna do, which is so good. That is amazing. I feel like more organisations should follow that. That's really great. And how long have you been with them for?

Josef

A few years now. Yeah

Sam

So you appreciate them and you really enjoy your day out with them.

Josef

Yeah.

Sam

Yeah. Nice. That's so important and you have friends who go to Lightbulb as well.

Josef

Yeah. Exactly. And I'm also involved with the choir as well. I also do an all abilities choir as well. Yeah. Yeah. Yeah

Sam

Nice. So you love to sing? And Yeah. Well, that's amazing. So you obviously are a very sociable person it sounds like. That's so great. You mentioned before that living with a disability is very challenging for you, but on the other hand, you are also very appreciative of your disability. and so I guess, what do you wish more people understood?

Josef

What I wish more people understood?

Sam

Yeah. About, disability in general?

Josef

What I wish more people understood was about inclusion and people's rights. Yeah. But also I feel like some people see people with disabilities as you know, they can't do that. They're not capable when there's a lot of them that are building good careers out there and are quite successful business people and are doing amazing things in the world.

Sam

Absolutely. So just this kind of, once again, stereotype, putting people in a box that, that people with disabilities live very, different lives. Well, sorry, let me say that again. People with disabilities do live different lives, but they're still inclusive, they're still sociable, they're still working. So you feel as though the wider society is very much not seeing people with a disability as being able to work.

Josef

I also feel like sometimes with people with more complex disabilities, they're sort of also looked a bit upon, not in a great way, I feel like sometimes people are shut down for having a disability and you can't have a voice. Sometimes I feel like people don't have a voice'cause they're not given opportunities to say how they feel. I feel like there's some old fashioned values where parents are the ones making choices, not the participants. I still think there's some people in the sector that have that same views with people with disabilities that they are valued in society.

Sam

Right. So organisations that you've been a part of or have just heard of in passing that they still kind of have that I guess view.

Josef

Families are involved and not participant.

Sam

Yeah. Okay.

Josef

It's family business, not participant business which isn't right.

What Good Support Really Means

Sam

No. That's an interesting way of framing it, the fact that it should be participants, what they wanna do and their decisions and where they wanna go. Correct me if I'm wrong, but I'm sure Lightbulb is it all adults?

Josef

Yes,

Sam

Yeah. Yeah.

Josef

They're very good at what they do. I feel like sometimes support are not. They don't know. They're not living in the shoes of people with disabilities. They're supporting us, but I don't think they always know what people actually go through the challenges,

Sam

So like the day-to-day stuff that might get unspoken about, and that's a really big challenge.

Josef

Don't wanna be weird, but I think sometimes people find being a support worker quite confronting. like I see on ads, I do not do this. I will not do this support. I will not support people in this. And I'm like, what?

Sam

So as in like your feeling that people wanna be support workers, but they're kind of picking and choosing what. That they'll do. Yeah. And you feel as though that's not right?

Josef

No, I don't agree with it at all. I think, you know, you shouldn't, you can be selective, but I feel you shouldn't. If you're doing support work, you shouldn't.

Sam

You shouldn't feel as though the worker can say, oh, I wouldn't wanna do personal care, but I'll go out, and drink with them kind of thing.

Josef

Yeah. I know it's not about you, but I don't know if you, have you ever experienced that with support?

Sam

I guess I'm lucky in that way because I would say no, I haven't experienced that. With my supports, I'm very fortunate in them being friends.

Josef

I think that's an awesome thing. I think that is really good. I think that is great because that's how they should be. I see people who's like that. I see'em as like family. Like I have support to leave and I still contact them and reach out to them.

Sam

Yep. So you still have that friendly relationship after they move away or something like that, so

Josef

Exactly right.

Sam

Yeah. And that's so important to have because for me, having that connection is so valuable. I've got a bunch of amazing girls and it sounds as though you are very similar in that way.

Josef

Yeah, I love support support workers as well.

Sam

Yeah. And I can imagine you being very good good at speaking about a range of things with them, and kind of telling them what's the go and what's not the go.

Josef

I love support workers and I like also like reviewing support workers when I'm out in the community.

Sam

Oh reviewing. So how do you review, just randomly?

Josef

I'll just watch them.

Sam

Okay. Okay. Is it kinda like a mental thing you do or do you kind of like say it out loud? Yeah. Okay. Yeah.

Josef

I'm very judgmental, if someone's not getting supported properly and I think their support worker is lazy, I say it. I don't say it to their face. I'll tell my mother and I'll tell other people what my views are.

Sam

because it is so sad to see a person, not being supported in the right way, or they may be ignored or the, the worker may be on their phone or whatever it is.

Josef

I don't like that.

Sam

No, and it's so horrible to see.

Josef

I have amazing team of support, mostly girls. I've got two guys, but yeah, mostly girls and they're amazing.

Sam

That's so good. And are they all from Lightbulb?

Josef

No, no, they're for another company called Fisher. So yeah, the guy I actually hoping he'll listen to this podcast. So the guy's name Steve and he's a good bloke. And he's someone that's been in the industry for a long time, like 30 something years in the disability sector. Very, very good man. Very awesome character, and he's very passionate about what he does. I told a few people I was doing this podcast and they'll said, wow. Because I think a lot of people are too nervous to say what they actually feel.

Sam

Which is sad, not being comfortable enough to, I guess, share your experience or talk about something that society kind of shies away from, in a way.

Josef

I don't see why people should shy away from things cause I feel it. know people are into privacy, but I feel people need to be educated on what's going on.

Sam

Absolutely. I agree. I guess from my perspective, I feel that society has this mentality, like you said before, that, people with a disability just fit in a box, stay home, just twiddle their thumbs, just watch TV all day, but that's really far from the truth for so many people all over the world.

Josef

Yeah.

Sam

Yeah. It sounds as though you know, you've currently got a great team of workers with you. And previously, you have kind of had to call people out when they weren't really listening to you.

Josef

Yeah. But I feel if you're the right person in the industry, I think it is a great industry to get involved with.

Sam

And when you say the right person, I guess, comes back to your values and, that kind of thing.

Josef

But it's also the willing to be involved in, you know, your client's goal.

Advocacy Achievements And Future Plans

Sam

Yes. And that's so important, isn't it? And so what kind of advocacy have you?

Josef

I've done a lot of things. I sat on a made Bunbury the most accessible regional city in Australia. So it was called Marcia. And that was with Dr. Adam Johnson. Adam was a PhD candidate down in Bunbury and he was working on accessibility. He did a research project with people with disabilities and I was involved with that.

Sam

Oh wow. And so Bunbury, is Bunbury still the most accessible?

Josef

I dunno if they ever got the standards for it, but he was trying to make it.

Sam

And how long ago was that, that you were a part of that?

Josef

Seven years ago.

Sam

Wow, that's so awesome. Yep.

Josef

So I did that and then I also did, I've also been involved with a number of other projects.

Sam

What are those projects if you are comfortable sharing?

Josef

I was involved with setting up a club called WA iSports. I was a founding member on the board of directors for that. So we started, I think it was in 2017 we founded that and it's still running now. I'm not involved anymore, I was also, have also been a finalist in the WA Young Achieve Award.

Sam

That's amazing.

Josef

I was also a finalist in that, um, unfortunately didn't win, but I was a finalist and one of my biggest joys was when we won the Regional Community Group of the Year for the Regional Achievement Awards. I was pretty pumped about that when we won that award.

Sam

That's amazing and to be nominated for awards is, I'm sure there's a criteria you have to meet, it just shows how passionate you are and how driven you are.

Josef

But to be a finalist in two categories. And I also won an award for my book, an international award for my book. Yeah. That's the achievement um I'm very interested in you know different things and stuff Yeah.

Sam

Following on from about your advocacy, why is advocacy and advocating for disability so important to you?

Josef

I love it. Yeah, I love it.

Sam

Just as simple as you loving it is a good enough reason to do it. Yeah.

Josef

I just love it and I

Sam

Yeah.

Josef

Helping people out.

Sam

That's great. And that shows, being nominated for all these amazing awards and recognition just shows how passionate you are. I feel if you weren't as passionate and as you said, loving it as much as you are, I'm sure that that wouldn't show in your work. So that's incredible that you've had such a passion for it. Are you on any boards at the moment?

Josef

No, not doing anything at the moment. Trying to start some businesses working. So I'm gonna do some marketing for a company and I'm also trying to start a coffee delivery business.

Sam

Oh wow. It seems as though you are always kind of working on something in the background.

Josef

So I do that.

Sam

Yep. Amazing. And so what are you most passionate about?

Josef

Um, inclusion and people's rights and understanding people and the human behaviour is very fascinating to me as well. And I find people interesting.

Sam

Yeah.

Josef

People may be a bit judgy about this, but it's, it's sometimes hard to know what people's capacity is. That's a very interesting area that I'm often looking at is capacity. It can be hard to know what people's capacity is sometimes.

Sam

Is that building relationships with people?

Josef

Can also be hard to create friendships and you know, people have sensory needs and different needs.

Sam

So understanding people's capacity and where they're at can influence how to build relationships.

Josef

Yeah.

Sam

Yeah. So inclusion, that's a major passion for you.

Josef

Yes.

Sam

Is that something that you've always had a passion for inclusion or is it just as you've gotten older?

Josef

Mainly when I left school. I had to do a lot of advocacy at school because school was a great opportunity, but there was challenges. I feel at sometimes I wanted to get into leadership at school, but they were against that. They didn't really want people with disabilities doing advocacy work or, um, leadership roles.

Sam

And how did that make you feel at the time?

Josef

Disgusted. Where's that group of people getting advocates for? No, they're not. I think a lot of younger people are getting better at understanding.

Sam

Yeah. And being more open to different abilities.

Josef

Yeah.

Sam

Within a school, within a workplace. Which is so important for anyone, no matter what your ability is, to feel included.

Josef

Yeah.

Sam

It sounds as though, you've achieved so much and you are going to achieve so much already, which is amazing.

Josef

Yeah, I also was fortunate to speak at the. It was a disability conference last year. Um, they had it over here in WA, down Fremantle.

Sam

And what kind of things did you speak about there?

Josef

It was about my book and about the story of my book and stuff. So I spoke at that last year and that was a really good opportunity. I've gone to UWA before and spoken to people there.

Sam

Majority of those talks in regards to your book again?

Josef

No, I've also spoken to, um, social work students and different students in Canada as well.

Sam

Oh, wow. Okay.

Josef

I've got a connection in Canada. Yeah. So I do that on, on Zoom.

Sam

So it always comes down to who you know, not what you know, isn't it?

Josef

Exactly. Yeah but like you I'm honored to meet you.

Sam

Mm-hmm.

Josef

A real honor, it's actually an honor, cause you know, to have people like you doing the podcast is very honorary. I was quite nervous to ask to come on this podcast because I was a bit scared, I was a bit nervous about it. And you know I thought this looked cool and I absolutely love the name of the podcast. I think it's a very sweet name.

Sam

Thank you. No, and it It's been great meeting you and I really appreciate your time. I hope it wasn't as scary as sending the initial.

Josef

I loved it. I love it.

Sam

That's great.

Relationships Taboo And Built Accessibility

Josef

I love talking to people.

Sam

I can really hear how passionate you are about, inclusion and, advocacy. What do you want listeners to take away from this chat today?

Josef

I just want people to know to stand up for their rights and to also, if you've got people with disabilities listening to ask questions. Families to ask questions when you are interviewing support workers, ask what they've done in experience or if they've not had an experience, train them up on how you should be supported. A big thing is ask for what you want. And if you are a support worker or someone wanting to get in the industry, ask questions, ask for documents. If you want to know things, ask. You know, you are supporting them. You should know. I mean, it's good to learn things, but you should know what you are getting yourself into.

Sam

Absolutely I think that was very well said actually. Having that voice is so important, isn't it? One final question for you, Josef, today, what are you most proud of?

Josef

What am I proud of? My family. I'm very grateful for my family. Well, winning my book awards and stuff. I'm very proud of. But I, I'm very fortunate for my family, my mother and my sister and my nana.

Sam

Yeah. Beautiful.

Josef

Very beautiful women. They've taught me a lot of lessons in life.

Sam

Mm-hmm.

Josef

And my sister-in-law and family members. Yeah.

Sam

Oh, beautiful. It sounds as though they're very influential people on you.

Josef

Yeah.

Sam

Is there anything else that you would like to add to this conversation today, Josef?

Josef

Uh, just about, people there's a lot of good people in the world.

Sam

Yeah. There, there is definitely a lot of good people in the world. Absolutely, it's just sometimes finding those good people, isn't it?

Josef

Yeah. And the big thing is just to be able to get understandings on why people do certain things. It's very interesting.

Sam

Yeah, it sounds as though you are very much always kind of wanting to know the greater depths of people's understanding and understand why they doing certain things.

Josef

Exactly right. I also find it interesting to learn about people. I feel like sometimes people, uh, I don't wanna sound weird, but I feel like sometimes people are not. What's the right word. I feel like some people think people with disabilities are. It's hard to explain. I feel like there's a lot of taboo subjects in the disability. I'm not trying to be rude, and I know it's wrong to say this, but I think in particularly I feel like with relationships that there's a lot of taboo subjects and I feel like there's a lot of subjects that people don't feel people disability should be hearing.

Sam

They're minimising their experience around relationships and that side of things.

Josef

Yeah. But also I feel like there's a lot of different things out there.

Sam

To support relationships?

Josef

Yeah and just support you know, where I've had situations where, so people, I know, I believe are a little bit isolated by their support workers and their support don't want them to do things because they don't feel they should or are too lazy for them to go and do stuff.

Sam

In the way of like enhancing their connections and like relationship? Yeah.

Josef

Exactly right. And I think some people think it's a too hard basket to take their participants out because they think it's too hard, which I don't agree with. There is a lot of social barriers for people in the community and I feel like it's unfortunate that some things were built in the 1940s and 1950s. It's wrong how some buildings and in particularly for people in wheelchairs. I've got pretty good balance, but coming from the country to the city, I believe the foot paths up here are less accessible because I feel like there's too much gradient with, you know, hills and stuff, and I see people struggling with going up on'em, and I'm like, why would these idiots build footpaths like this when they're not accessible? If you're gonna be building a footpath, you should be consulting with people with disabilities on how the gradients, with the footpaths.

Sam

Absolutely. There's so many times when you go somewhere and they're like, ah. This is not accessible far from it. And lucky, I don't have a big wheelchair, so my friends can just tip me back and go up somewhere. It's not always that easy. But it should be easy. You shouldn't have to call up somewhere and go, oh, is this place accessible?

Josef

No you don't. I think sometimes people don't realise when they build cafes, restaurants I know it's a big outlay for them, it will get them more customers.

Sam

Absolutely.

Josef

We need accessibility getting into buildings and it's hard. Because it's not just for people in wheelchair. A lot of the senior citizens also struggle with their Zimmer frames. Put basic lifts and stuff in. I think some people believe certain accessibilities just use that as a store room.

Sam

It really minimises people with a disability going places and we're like an afterthought, especially when the toilet is used as a store room or the change room has boxes in it. And like oh, you weren't expecting someone with a disability to, use your store.

Josef

Going back to the accessible bathrooms. I like to go into accessible bathrooms because I find them more calming and less noisy and stuff, and I go into them and I'm like, why are you using that as a store room? You're an idiot.

Sam

Yeah, absolutely.

Josef

I'm like, what the hell are you doing? Well, anyway, sorry for ranting on for this morning.

Sam

You absolutely did not rant on at all. It was an amazing conversation. Thank you so much Josef for coming on this podcast and having a chat. I've really enjoyed it and I've learned a lot from you.

Josef

Thank you, Sam.

Sam

And that's it for today's ride. Thanks for rolling with me. Make sure you're following A Wheelie Good chat on Instagram for all the latest updates. And if you're loving the chat, don't forget to follow the podcast on your favourite streaming platform. Stay safe everyone. I'll catch you next time.