Identity, Community and Disclosure

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Nothing's off limits. It's off limits. Bringing together experts and people with lived experience to discuss the topics we love to avoid but absolutely need to talk about made with the support of efficient Australia and the NDIS information linkages and capacity building grants, including grants.

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Hello and welcome to the series where nothing's off limits. My name is Polly, and together with my co-host Tess, we're continuing to delve into those subjects which might usually be considered off limits, discussing them openly and honestly and through the specific lens of blindness innovation.

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And as always, you can download this fabulous podcast via the Vision Australia website. Just go to Vision Australia dot org and type. Nothing's off limits into the search engine, and you'll be directed to our web page where you can subscribe to make sure you don't miss any episodes or if you'd like, you can tune in Vision Australia radio and this is our last episode. We're so sad and we were so hoping that we could all be in the studio together for the for the final time. But unfortunately with lockdown, we're all doing a fabulous recording session from home, so we do apologise if the quality of the podcast isn't fantastic. We hope you're really going to love it because we're really excited about it now. We probably

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absolutely. That's right. And yes, I'm talking to you from my wardrobe, so I enjoyed the ambient sound effects. And so in this episode, we're talking about identity, community and disclosure, and the way that we identify ourselves can impact the way that we're viewed in our communities. And for people who are blind or have low vision accepting that they have a disability and disclosing my disability to others can be challenging. So we've lined up a number of guests who have lived experience in this area while thinking about the way we are viewed by others. It's important to think about how we view ourselves, and so we asked you how you would describe yourself using just three words, and we got some really interesting answers.

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Nothing's off limits with Tess and Polly and Polly. How would you describe yourself? In three words cold,

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dark and handsome.

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Kind there and fees are fair and fierce. That's a good

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mix. How would I describe myself in three? Would I think I'm very calm?

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I'm resourceful and I'm resilient,

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fun, happy, cruisy,

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fun, energetic and sport obsessed.

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That took me quite a while to think about, but I think I'd describe myself as loyal,

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determined and curious, enthusiastic, passionate about technology.

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Me, in three words. Radio presenter, twin Derby and London are in exile, although I think that comes to about seven words. Sorry about that.

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You're listening to a Vision Australia Radio podcast. Nothing's off limits with Tess and Polly.

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It's time to welcome our first guest for this episode. Now we often find ourselves subject to labelling from others, whether it's family, friends, people in the community, so we're going to ask our guests to introduce themselves. Jason Weiter is possibly a familiar voice to some of our listeners. Jason, thank you for joining us. And how would you introduce yourself?

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S4

Hi, Tess. Hopefully, you know what? That's probably how I do generally introduce myself to people with a good hello and a smile on my face. Look, when I think about it all depends on the city and the situation that Tom brought into. I guess in most instances, instances I should say I do introduce myself. Having a vision impairment will go up to fashion is usually the first thing I would say is that I'm not actually here drunk, although I look at it, I am blind, so I put a bit of a comical spin on it. And that usually gets a conversation going. A bit of an icebreaker, and I'm sure you get addicted to a lot of blind drunk jokes as well along the way. I was absolutely looking Typekit and, you know, the only one looking like a fool, and you don't even have to be drug to do it. No hangovers in the morning.

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Jason, do you identify as having a disability? I mean, is that how you would describe it?

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S4

Yeah, I do. Look, I'm and I'm quite open about it. I mean, it is the truth. I think, you know, the definition of a disability is something that either is a condition that limits one's senses or activities or is a disadvantage and puts them at a disadvantage now. My eyesight having very low eyesight. That's definitely a loss of made sense. And that does limit, you know what I can do in the community, and it put a disadvantage to people that are fully sighted. Is it true for my eyes? Like I would say, I have a disability, and it's just what it is. I mean, you should see my applying golf, for instance, to my mates, and I'd ask them to point me in the right direction of the whole thing to put me the opposite just to score. I think that's a disadvantage.

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But oh, you just need new friends. I'm not sure.

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Maybe that, maybe that. But look, we will all jokes aside. I don't see a need to hide the fact that I have a disability. Yeah.

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Leading on from that, how important is it for you that those around you accept that you have a disability? So it sounds like you have a really good relationship with your friends and that you're already comfortable about it? And you know, that's supportive, but also, you know, making fun sometimes. So is that acceptance a really important part?

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S4

I'm going to be honest here, and I don't want to sound discourteous to others when I say this, you know, it's not really that important. It would be nice if everyone could accept the fact that, yes, I have a disability, this is it, and that Jayson Tatum, who he is. I'm not going to let it stop me doing the things I want to do.

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S2

So it sounds like actually the really important thing for you is your own acceptance of having a disability.

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S4

Definitely. I'd say that is probably the most important step, a far more important than what others think and should be. The world's not going to stop because I have no idea. So why should I stop doing the things that I might do? It probably has it. I asked different things, for instance, disability, bodybuilding and playing blind tennis. Now these are things I would never have got into in the past, and these are probably things that I wouldn't even have a competitive edge on in the past. But now having low eyesight and accepting that and going out and taking on these activities has allowed me to become good at something. I also think that or accepting my disability, it prevents me from doing reckless things from time to time. So I don't want to go out and take that car sun dry up and then blamed on of our vehicles on the road and maybe pedestrians.

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That's a really interesting point. And and it sounds like you really have taken ownership of your disability and that's something that you haven't struggled with. Or has that been a process for you?

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The moment I hear myself was deteriorating, what was happening, it was just like, Well, let's move on. Know, I think it's something I've grown up with in the past. I've had a medical conditions, probably since day one, so I've had to adapt. I guess I learnt at an early age how to adapt to things and then say, Well, look, I'm not going to be able to do this. Let's find something else more realistic and let's proceed. So that is something that I wanted to do. I have not had my heart set on it. I would make modifications to look at ways I could do that and then allowing people to see that I can still do it. That's doing well can really accept me for that anyway. So their experiences like I you, Jason, and he's what he's doing. We accept him for that. And how do you

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think more broadly, disability kind of sits within the community? Do you think that there's a stigma around discussing disability, around having a disability in the wider community?

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I think that's sort of one of the things that sits on a scale. So you'll have those that will say, Look, disability is what it is. It's fine, it's part of life. Then you'll have a disability and their disability is that dirty work and it's something we don't want to discuss. We want to put it aside, and I think there's a lot of reasons to come to this. I'm not a sociologist or anything like that, so I don't know the ins and outs of it all. Well, what I see in the community is that more often than not, it's not the actual person with a disability, and it's not the person who's not closely associated with disability. It's the people in the middle, the family members or carers or support workers who want to sort of say that, well, don't call them disabled. They say that any part of everyday community, they require the same as everybody else, and that can go to wage when it does encourage people who have a disability can do things. But at the same time, it can be harmful because if we put somebody in a situation where you're saying you're quite able to do exactly what someone who's got a disability can do and they can put their life in danger. Should we really be spreading that? So we were saying that and saying, OK, well, let's just disregard the term disability, especially if we don't, what do we call? Those are people that are going to be disadvantaged or they're going to have trouble, is an actor. And he would say he coaches people and he has these terms that goes on to say that you all have a disability and the Disabilities Act, in my eyes, that sort of something that stands out to me. I guess it's one of those things that reaches out to say, Well, we have a disability that doesn't define me.

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I wondered if you had any advice you can share about that disclosure component. So whether it's disclosing to people that you just meeting when you're out and about or whether it's in a more formal environment like, say, starting a new job or even going on a date? Have you got any advice about how you can disclose your disability in a way that, as you said, makes you feel that you have the agency over it?

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Take control over that one? I think it comes down to a type of disability, just like some of the some of the most openly obvious. You don't need to disclose it because it disability itself got disclosed to everybody around you. Tarantino for missing a limb or you need to get around a white cane. But then when there are those that are listen, I suppose it comes down to the person how confident they are to disclose that do they need to disclose it? And if he don't disclose what? One of the reasons why she disclosed, because in my opinion is the truth is always best. I think it's always important to disclose it upfront, first and foremost, because it gets that side of things at the way. The advice I gave is just to be open, said, When you introduce it, tell them upfront. First and foremost, they will probably respect you more for a honest and you will probably get people that say, Well, okay, is a person just not capable as someone else at end of the day that she can affect people as well?

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Jason, thank you so much. As if we were on our first program. So it's so lovely to have you bookending the series, and I love your advice about, you know, maybe if you're confident enough going on the front foot and that's your way of kind of taking ownership of how you want to represent yourself, that's as ever fascinating and really helpful.

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S4

Always a pleasure. Polly, scientists, thank you so much for having me on.

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You're listening to nothing's off limits, where Tess and Polly did, you know, Vision Australia has produced a range of stand up for your rights guides to support you to understand and exercise your rights. For more information visit Vision Australia dot org or call one 800 eight four seven four double six. Vision Australia Blindness Low Vision Opportunity. How would you like to support the blind community, those with low vision or a print disability whilst promoting your business at the same time?

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We now have a panel of two guests, and both Courtney McKay and Adelina Holloway will be familiar voices to some of our listeners. They're both here to talk about their experiences around identity and disclosure. Thank you both so much for coming back. How would you two introduce yourselves? Maybe starting with you, Courtney.

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S6

Yeah, OK. So in this context, which is semi professional and where blindness and low vision is a topic of conversation, I might say that I'm a psychologist with lived experience of blindness. I've got 15 years of experience working in not for profits and local government, and I'm currently managing Vision Australia's children and Young People team in Queensland.

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Adelina, how would you introduce yourself?

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Usually, my guide dog Tilly does a bit of an introduction in that I am vision impaired, so she and people usually look at her, look at me, look at her, look at me and kind of think, is she or isn't she? Because I don't present as vision impaired except that I have her? I'll get asked a question straight up, Is she mine? You disclose that point? Yes, she's mine. And yes, I have low vision and I, but I still can see. I can see you and I could see my surrounds, and that usually relaxes the person. And then I will also say that, you know, I'm a middle aged mom of a couple of teenagers and fierce advocate for different, not less. And and, you know, I'm a kind of fairly confident, outspoken middle aged female who's become more and more a fierce advocate for people with disability. So how big a part of your identity is your disability? You know what, it hadn't been until about three years ago when I had a kind of or have had a marriage breakdown, and it caused a lot of stress that caused me a lot of vision loss and quite a considerable amount of vision loss. And I really had to realise then that I couldn't hide from this anymore. It's around about the same time I got the dog, so I was a real pretender. I would pretend I was sighted, not disclose to many at all and still try and be as excited as I possibly could be. So I never identified really until about three years ago. Now, to answer your question, I probably identify all of the time.

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S6

Yeah, it's definitely a big part of my life. Being blind sort of dictates how I do everything, how I move, how I communicate. It's right at the forefront of how I operate. It's not necessarily always at the forefront of my mind, though. I just get on and do things. But it's definitely the reason why I'm doing those things in ways that differ from everyone around me.

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I think that makes a lot of sense. I think your disability can really barriers to how much a part of your identity is, so it's wonderful to get to slightly different perspectives and how

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much is acceptance. And this is something we talked about with Jason as well. How much is your own acceptance of your disability? A key factor? Courtney, how about you?

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S6

Yeah. So we've talked about grief in one of the earlier episodes. Bargaining and denial are natural parts or natural states associated with grief. A little bit like olina said, you're entitled to your denial. You're entitled to try and work around the disability as you're adjusting to it. But resistance definitely burns a lot of energy, and at some point I have come to the understanding that that energy is better used on working towards what's good and possible for me and the people I love. So getting on good terms with reality is an important daily practice and I try to engage in.

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If you are struggling with that, what are some of the kinds of things that you can do to become more accepting of your disability?

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Among the most effective things that I've done to become more accepting is to rub shoulders with other people with disabilities and people that I admire because of their strong identification as somebody with a disability, their pride in who they are and learn from them. That's really accelerated some of my growth as a person and my ability to be out in the world representing my community in a way that feels

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comfortable for me and you, Adelina me trying to hide and cover up and pretend was exhausting and absolutely exhausting, and I just didn't want to do it anymore. And I realized when I started to work back with Mission Australia and work in the NDIS space, and I was privileged to have a role where I would stand up in front of people and tell them how supports could change their lives. And I could do that from a place of lived experience. So I realised that, no, I didn't want to stand there and tell people what I what I could say and what I could do, but what I couldn't do and how I could do it with support. So that's when I sort of started why I put my advocacy have had on and really, you know, now that I'm almost privileged to be in this position now because I can change people's lives so by my lived experience and how I can educate them on how they can live a full life because often people in such a. A bad place, and I now use my voice to be part way, change that for them and show them that, Hey, you know what? It's possible, it's possible to still be very empowered, especially as a woman. I speak a lot with women to be empowered as a woman, and you can still be a beautiful and desirable and well dressed and wear those heeled boots in that dress and we have a guide dog in your head. You know, that's that's my passion, and that's what I try. So that has really helped me come into my own as someone with vision loss. Absolutely.

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I'm just really interested about, I guess, the change that's come in around NDIS, where you have to talk about the things that you're not able to do in order for them to be the understanding about what support you need. How much do you think that's changed the dynamic of how you think about yourself?

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We have to now teach people how to speak the language of the NDIS, and it's really hard for someone to sit there and say, for instance, they ridiculously worded some of these questions like, you know, there's a self-care section, can you dress yourself? And everyone wants to say, yes, of course I can dress myself. We have to teach them how to say no. Yes, I can do it, but I need assistance. In my case, yes, I can dress myself, but I need help choosing color. I need help putting makeup on in that then comes on top of that. I need an occupational therapist. I need perhaps someone to show me how to put makeup on. Is a vision impaired woman. I need better lighting in my bathroom. I need my magnification, so we need to change the way people are thinking. So instead of just saying Yes, I can do this myself, yes, I could do so, but I need help.

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That's fascinating. Courtney, have you found any, I guess, changes about how you feel about yourself or how you present yourself going through the NDIS process?

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It's pretty common that when you are long term vision impaired or you've had a disability of any kind for a long time, you've become really good at work arounds and everything that you do has been adjusted. You're using tools using strategies that the average person on the street couldn't even imagine. But because they've become everyday to you, you don't necessarily know how to articulate them, to break them down into tiny little chunks and feed them to somebody who has no experience of your disability. But that is what you have to do. You have to be able to articulate all of those work around. So you can say, Well, yes, I can do this thing that I require x y z in order to be able to do that above and beyond what the average person does. So for me to lead an ordinary life, I have all of these adaptations, some of which will require funding for me to be able to continue Adelina.

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You mentioned before the importance of emphasizing being different instead of saying, Listen, can you tell us a little bit about why that's important? Yeah, absolutely. So you know, in a nutshell, it's I try to, you know, empower people with that thought that you're not less than anyone else because you have a disability. You just do things differently. You know, we we can do anything that anyone else can within our limits of having low vision. But we just as Courtney said, before we just do it, we adapt the way we do it. So, you know, we considered a computer and we do our job, but we need assistive technology to do that. You know, I can I can walk to work and commute to my workplace, but I need my dog beside me to help me to do that. It's just those little tweaks we have in life to now enable us to to do things differently. But we are certainly no less than anyone else

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on, Hey, how do you negotiate those boundaries around helping people to understand a disability? What's not kind of taking on the responsibility of being everyone's teachable moment? I know that's something we've kind of touched on before, but that's a really tough thing to do.

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S6

Yeah. And I kind of running a bit of a cost benefit analysis when I bump into people. So I'm looking at whether or not they have the capacity to learn if they're deeply invested in a particular way of seeing things and that gives them a sense of power. Then I know that it's probably not going to be productive to push, you know, I come across a lot of people that are just not that great at perceiving and integrating new information generally. Sometimes it's time limits, so it might only be a passing exchange. I will do things differently then, as opposed to if we have a bit more time to explore, and I'm also thinking about my emotional reserves. So if I'm already depleted, then it might not be worth trying to educate somebody when I'm feeling like that versus when I have the energy to do it. If it's service, I'll try to work with a person directly the service provider. But if they're combative and I sense they want to dominate me, then I'll send the feedback up the line, hopefully to somebody who's a little bit more reasonable. So it's about balancing my capacity, their capacity and the impact on my community. Oh, that's

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fantastic. A fantastic kind of methodology to use.

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Finally, Adelaide, Matt and Courtney, what are some steps that people could take to make it easier to disclose because we know that disclosing can be very challenging? Adelina, would you like to? Yeah, look, I. I think that something I've learnt in disclosure is using it as an opportunity to educate as well. So when I disclose or have done in the past, sure, I've said I've got low vision, but I've just explained what that what that what that looks like for me. And I let you know what I can see. You know, I can see your face, I can see you standing in front of me. I can tell that you're wearing a dark color, but I probably can't see beyond that. You know, just give me a little bit of a context of what I can see. And just to give them an understanding. And it makes it when I do that, it tends to make them a little bit more comfortable. OK, then I can look her in the eye and I know she's going to make eye contact with me to some degree. Or it also helps if I'm out and about, especially in dimly lit situations. If I disclose before I go into the venue to someone who may not doesn't know me very well or just met. You know, it's just having the confidence to be able to explain to people what, what, what you can see and how they can help you out a bunch of friends. I was in Byron Bay once and one of my friends pulled me back from not stepping out front of the car. This before I had my dog and he screamed. I mean, he was very, very mad because I've known him since university and he said to me, Adalind, we just need to know what you can and can't see, so we know how to support you. So very nice work. I mean, just so, you know, stop being so bloody independent and tell us how otherwise you're going to get killed, you know? So and that was it. That was by then they kind of did an intervention with me that night and sort of said, You know, we we need to know you're obviously not the woman you were at university. Clearly, you can't see what you used to be able to see. So we need to know now so we know how to support you. And then it just takes the pressure off us as well. And I never looked at it like that before. I've had to really think about how it affects the other person and how to fix those around me.

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S6

Yeah, I think when people acquire vision loss for the first time or they're new to disability generally, that there's a real aversion to joining the community and identifying as somebody who's one of many with a disability. But one of the benefits, I guess, of being part of our community is that you get to review a range of approaches, what other people have done before, and you can choose what things might look like for you. And that includes in relation to how you disclose your disability. I would recommend that people think about different situations because it will vary, as we've talked about already today. And I also think people need to be gentle with themselves because you'll be learning about how to do this well for yourself, for the rest of your life, and you'll choose and change your mind over and over and over again. That is a

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wonderful note to end on Adelina. Courtney, thank you so much for being here and sharing your lived experience with this is just being such a privilege chatting to you and wonderful to

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be here and congratulations on a great series.

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S4

Guys, thank you for having me and have a be a part of it. I've really enjoyed it and I hope it helps lots of people out there. I really do. Well done, guys.

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Thank you both so much and Jason too. And as ever, this is just the start of the conversation about identity, community and disclosure. And you can visit the Vision Australia website for some useful resources and information, including an article with some tips about how you can disclose your disability to employees.

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We've just finished our last episode, Tony. I know I don't know what to think about this, but we could not have done it without some very special people. I have the great honour of first and foremost, thanking our wonderful collection of guests. We I look, I'm sure that people would love to listen to Polly and I just chattering white. We certainly do.

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Shortest, I'm less sure. But yes,

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for those who don't feel like listening to us, just chatting away, our guests have brought something just fantastic for podcast. Thank you to everyone who participated in the box. Pops just added some fantastic color. Thank you to our listeners, our wonderful listeners. I mean, what would be the point of creating a podcast that you to listen to us and tell us where we're going right or going wrong? And finally, and I speak on behalf of Polly and myself. It is most important and so much so very important to thank our wonderful producer Jace. You were huge that day because he had just been a wonderful source of support and expertise. He holds us in line cases in line when when Polly and I are having too much fun and

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easy, not an easy task.

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So it's really not and really more than anything else we could not have done without him. So thank you, guys.

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S1

Thanks, guys. It's the lived experience of our guests that really pulled it together. I really appreciate everyone's

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efforts, completely stressed

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and remembered. This episode and early episodes of Nothing's Off Limits can be downloaded from the Vision Australia website. Just go to Vision Australia dot org and type. Nothing's off limits into the search engine and you'll find our web page and you can catch up with all 10 episodes, as well as resources that go along with them. And we'd love to. Your feedback about the series of what you liked, what you didn't like and what you suggest should there be a second series? You can reach us on nothing's off limits at Vision Australia dot org that's nothing's off limits at Vision Australia. Org No apostrophe upon apologies there for the grammar experts. But we do hope to be with you again soon. Until then, thank you so much for joining us for the show where nothing's off limits.

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That was nothing's off limits. Made with the support of Vision Australia and the NDIS information linkages and capacity building grant. Learn more about our radio and podcast offerings by visiting V.J. Radio, dot org and access all there is to know about our range of client services via our website. Vision Australia dot org. We thank everyone who participated in this episode, but especially you for listening today. We rely on your support, so please share this podcast with just one person today and brighten our day or write us on your preferred podcast platform. Bye for now.