OPENER

Here at CDAH we acknowledge the traditional owners of the lands that we live, work and meet on. We pay our respects to elders, past, present and emerging. And we acknowledge that this land was never ceded. This land always was and always will be Aboriginal land. 

Welcome to the CDAH Peers Podcast. This is a space for peers to chat about what matters to us. You’ll meet peers from Community Disability Alliance Hunter or CDAH. Sharing lived experience with peers and allies. This series is all about human rights. Some of these topics are challenging. So we will make sure there is a clear warning for each episode. So you can make a decision that’s right for you. So come and join the conversation because there’s nothing about us without us.

INTRODUCTION:

CATH: When was the last time you felt genuinely included? Do you remember what it felt like? Or maybe you can’t remember a time when you felt what it was like to be included in a way that was natural and where you felt valued. 

Hi, I’m Cath Mahony and welcome to the CDAH Peers Podcast. In this episode, CDAH Peer Ashe talks to Naomi Curry. Naomi is on the board of CDAH and also represented CDAH at the Hunter Community Alliance Founding Assembly. In this conversation, they talk about inclusion, which is a human right to be included in all sorts of spaces, from schools to hospitals, cafes to nightclubs, sporting venues to theatres, to be included in the planning and using of these spaces and places. A word of warning.

This episode explores what it’s like not to be included in lots of different parts of life. They talk about not being included in medical settings and in decisions, and this may raise some issues. Now let me introduce your host, Ashe.

INTERVIEW

ASHE: Today here on the podcast, we are talking to Naomi Curry. Welcome. 

NAOMI: Thanks for having me, Ashe. 

ASHE: So you’re very passionate about inclusion. What does genuine inclusion mean to you?

NAOMI: I guess genuine inclusion for me is I guess accessing your community without having to, I guess preempt what you might not be able to access in terms of just accessing, going into a building. You know, if I, I very often have to pre-plan things to make sure that building can be accessible and to know where I guess the disabled toilets are. So.

For me, I have to constantly plan everything that way when I’m going out and about in the community. So I feel like that’s not, for me, that’s not inclusion as much because I have to be thinking so much about how we access or where I can get access to something. I think inclusion is also for me is about the thoughtful approach of when

If I was to go for an interview or something, you see at a job description, like, that they are willing, they’re reasonable and necessary adjustments for, could be during the interview process. I think people cope better with being able to have the options, I guess. So if they don’t do well with

a talk if they don’t do well on a panel of… I’ve been on interview once where there was a panel of people and so I just… I learnt to ask questions before you go into the interview. So what’s the set up like? Is there going to be a lot of people in the interview room with me? Because I have a bit of a problem with anxiety.

So even doing something like this is bit intimidating but I find this task is genuine inclusion about getting our thoughts and experiences out there to educate the community. That can influence the community in a younger generation to make…

genuine inclusion options, I guess.

ASHE: Is there a time that you actually felt real genuine inclusion in the process of something that’s not, say, an afterthought? 

NAOMI: Yeah, that’s exactly it. That’s what I was getting at. The afterthought of, we should have done that. It’s a bit tiring because sometimes you don’t know what you need.

Because you haven’t been to that place. Because I haven’t been to that place exactly or if this is a totally new experience like when I first started applying for jobs. The times are very different compared to when I started doing that in my early 20s and there was none of this reasonable or necessary adjustment. 

The practicing of an organisation or a service provider being truly inclusive and workplaces, it’s just changed. so now I feel like you feel a bit more confident because it’s on the radar more, I think, especially when you’re accessing a job agency. And I’ve got a lot of unique…

need and when I first started working I didn’t know what I needed. So very often I have you kind of struggle because you’re trying to find your feet and trying to go in the right direction. I guess it’s a form of masking I guess in terms of putting everything’s good I’m coping and because you have the fear of if they see I’m not coping then.

you know, might not work out because you have the, is it like a trial period? Yeah, the trial periods that are usually three to six months. Yeah, and then I’ve had it where they’ve pulled the pin on me, you know, because I had quite a few, there were times when I had to have medical leave and I feel when you’re truly included is,

you feel safe enough in a workspace to disclose however much you want to disclose about your disability. And for me, it was my mental health. this was like early 2000s. And I was so fearful about disclosing.

like my mental health struggles because I saw my mother go through the same thing. her employment provider sort of forced her hand in having to retire early unnecessarily. I guess that really, my mother’s experience has really impacted me in terms of when I’m…

trying to go for a job or I go into a new work space and that do I or won’t I disclose and I found, you know, some people do it, you know, like anything. are workplaces that really embrace it and are inclusive, so, there are others that aren’t. 

ASHE: What do you think that companies or people can do to be more inclusive? 

NAOMI: I think a workspace should have a culture of learning about disability in general and I think you’ll find there are people out there who have probably questions or

curiosities about disability and but maybe they’re a bit fearful about wanting to know like learning more about it and going in the right way how someone who genuinely wants to know the disability community. Most  people I think have not good intent, but they do. I think they’re just wanting to learn.

and no more. But some people, and I think you build up a bit of an instinct in that when someone asks you a question, it could be something, and I’ve had this asked before. I was shopping one day and this man come up to me and he’s like, I’m a doctor.

is your medical diagnosis blah blah blah yeah that’s pretty much what he and this this was in my up when I was shopping and I was a lot younger and I said well no it’s not that isn’t my diagnosis and I’m not going to tell you and I had it I was I probably said it with a bit of attitude and like you know I think at first it was just shock and and

that someone could ask something like that to me in such a public way and there were people around me too while this was going on and I said you, I think you build up, you start to learn when someone’s just being nosy. 

ASHE: Do you feel like, due to that extremely inappropriate because it’s a doctor as well, but do you find…that happens a lot in the medical field?

NAOMI: yeah, they think they have, yeah they just have this, well it’s bit of a hierarchy thing, like doctors think, and I shouldn’t say all doctors but some have a bit of a God complex and this superiority that comes with being a doctor. I’m very assertive and I’m upfront and

when a doctor deals with me. Sometimes it’s a bit jarring for them because I will question things when during a consult or if I’m in hospital and I may disagree with something and they’re yeah, a bit shocked by that and I think, and if they haven’t met me before.

because I’m a smaller person, I have that comparison of small person, small brain thing, you know, and it’s, I’m not saying everyone thinks like that, but that is what I’ve experienced with the medical profession. Yeah. 

ASHE: Do you think the medical profession hasn’t been trained to be inclusive of people with disability? 

NAOMI: Exactly, definitely.

Well I know for a fact that in the medicine degree, like when you’re doing the degree of medicine, there is no specialisation around disability. You know, they have rotations and they may go from immunology ward to respiratory or it’s very sectioned and they get to do things, you know.

across the board and nursing’s similar too. They may learn about disability like in a lecture environment but what I’ve seen in a practical domain of when students are learning medicine or they’re learning to become a nurse or they’re learning to become a physiotherapist or OT, it’s that hands-on experience and I’ve…

I’ve asked a few people, even with physiotherapy, when they’re doing their degree and they’re learning about it, is, and I’ve asked, do you have studied disability, whether that’s in a theory or, I mean even, like in the hospital it’s very different because people are there and they may have acquired this new disability.

But for the… I guess what I’m getting at is with

when you’re learning to become an OT or a physio, I don’t think they learn much about the culture of disability and learning about having that, I guess, asking and learning about your patient’s experiences first hand. I don’t think that happens really. 

ASHE: You think it’s across the board of the health sector?

NAOMI: Yeah, I do. Because, I’ve seen this before, just observing other patients in hospital. If someone has a stroke and it’s severely affected them, that they probably can’t go return home and they may have to go into care. I’ve seen the way the health profession.

just sort of make all these judgements about the person, that this is what’s going to happen and we can only get you to this place. I think there’s just no sort of empathy or tact even. They’ve got this…

they have this, they know better, you know, and we live it every day. 

ASHE: Yeah, we have a lived experience with it every day. 

NAOMI: That’s it. I think that the lived experience, I don’t think they value it much. I do think they underestimate personal experience and lived experience of disabilities and the barriers you face going through multiple aspects of life in different places and different sectors and so forth.

ASHE: What do you think the health sector can do to improve inclusiveness? 

NAOMI: I think it needs to start at education. So when someone goes, when they’re at uni and they’re studying their chosen profession, I think universities, the course curriculum people could really benefit from

having people with lived experience or disability actually being a part of maybe the teaching side of things like in some capacity for. So yeah, I think students actually listening to people with lived experiences or disability would be, I think would be very beneficial to their education.

And then even, then, but then it’s also about hospitals and, you know, health services. You know, there should, I think there could be…

there could be plenty of room to involve people with lived experiences. Ensure that we’re included in the decision making and those type of things. For example, when you’re in hospital, and I can use the example of someone with a stroke, they’ve now got disabilities related to their stroke. But I think

you could have, when it comes to that person being discharged, discharged from the hospital setting and they go through rehab and that, I genuinely think that person could really benefit from…

maybe having someone come in and chat to them and who’s gone through that experience themselves maybe. And I know they do something similar for people who have spinal injuries. There’s one service in Sydney and they…

you know, they employ people who’ve gone through that experience of sustaining a permanent spinal injury and they end up in a wheelchair or whatnot. Yeah, there’s people actively employed in, it’s almost like what we do here at CDAH, they become a peer, you know, but then that person can then be giving a lot of insight to, in a clinical setting.

as well.

ASHE:  Yeah. Yep. I know with a d/Deaf community actually they’re trying to also get that when somebody gets told they have a deaf child that they go in and start working with the family to help provide the Auslan and stuff like that. So it’s just like another option that’s given to parents as well rather than just one type of option that usually again the medical field tends to usually sway more that decision. That’s more about that.

kind of viewpoint. Can you give us an example of when you actually felt generally included? 

NAOMI: Yeah, it was when I was asked to represent CDAH at the Hunter Community Alliance founding assembly. Yeah, I got asked could I…

be that person and I had to get up on stage. It was only like a, not a few seconds, maybe about a minute. You know, so wasn’t a big speech or anything, but I had to be really succinct and on point in what I said on the night. Inclusion for us was all about being at that.

having a seat at that table and at the beginning, not always an afterthought or something like a mere formality that, well, organisations or whatnot just tick a box, yeah, we’ve done that. You know, we showed a few people in the disability community, you know, we’re all over it, we’ve got a…

council projection plan for the next years. it’s get people involved at the beginning. Nothing about us without us. And you know when it comes, it all comes back to about having that seat at the table for making those decisions that are going to impact on people with disabilities in their future, for their future.

ASHE: And do think too there should be a spectrum? Because sometimes I feel like they tend to pick certain type of people with certain type of disabilities. 

NAOMI: Yeah, of course. It’s like anything. know, all our experiences living with a disability are unique to that person. So I can use an example. If I was to walk around,  because I can walk,

very limited.

I’m very aware of people staring, you know, and because I look different, you know, that’s, and, you know, I’ve had instances where people have called out and said things, you know, but if I’m in a wheelchair, it’s, yes, I still get looked at, but there’s no, there’s not much engagement.

I shouldn’t say it’s engagement when someone calls out but I don’t get the… the obnoxious and the…

Yeah, well it’s abuse, you know. So yeah, I don’t cop that. But a lot of people, people who are short-statured people, experience that a lot. And they’re ridiculed. 

ASHE: God bless you, that’s what I got.

NAOMI: Yes, I’ve had that too. 

ASHE: You’ve the God bless you. You’re moving really well. How do you find things? They think that’s inclusion.

NAOMI: I’ve actually had some people who’ve sort of run up to me. They may be preaching in a public venue. I’ll use an example of Newcastle Mall, Hunter Street Mall.

I was 14 or 15 and I was out with my girlfriends and we, you know, you’re 15. Like I was at that stage where I just want to blend in and I can’t blend in with the way I look. But I thought I, you know, I could. And I was just there shopping with my friends and we got surrounded by this big group and

and they asked me, could they lay their hands on me and pray for me? and you know, God, if you just, you know, had, if you love God, he loves you, and you won’t, you can live a better life, kind of more or less saying, like, they came across as, it was really pitiful, you know, like a pity.

ASHE: They don’t think we have full lives. They think we always have this more sad life, or we don’t have full lives, or we can’t live full lives, or we have not… …understood or accepted ourselves. 

NAOMI: And then they use the word heal. We can heal you. And my friends would… And we still laugh at it this day. And they’ll say, Well, just get out of your chair Naomi and show them you can walk.

And that’s the, I mean, you’ve got, I use humour a lot when you are experiencing. It is quite traumatic when you, when, if you’ve experienced something like that. I don’t have a problem at all with people practising their faith and that, but it like, when I’m out in the public and I’m, I was 15 with my friends,

I wanted to shop. That’s what I wanted to be. didn’t want that and it affected, it came home with me. So it ruins your day. they think they’re been inclusive, but they’re not. 

ASHE: Thank you so much for coming in today to the podcast and sharing your experience with us and talk about inclusion. And hopefully we can start to get more inclusiveness for people with disabilities. Nothing about us without us. 

NAOMI: You’re welcome.

OUTRO:

CATH: I hope you enjoyed this episode of the CDAH Peers Podcast on inclusion. Thanks to Ashe and Naomi for a conversation which really highlights the importance of lived experience and for us to have a seat at the table. I’m CDAH Peer Cath Mahony, looking forward to joining you next time on the CDAH Peers Podcast.

CLOSING CREDITS

Thank you for joining us on the CDAH Peers Podcast. This podcast has been made by peers at the Community Disability Alliance Hunter. If you’ve enjoyed this conversation, you can follow us and subscribe so you don’t miss an episode. We aspire to best practice and that’s why this podcast is made in many accessible formats. If you would like to learn more about this podcast and CDAH, head to cdah .org .au forward slash podcast.

technical production by Tim.