audio1045683277-peta

Peter, who has cerebral palsy, discusses his journey and experiences with Leanne in a podcast. He explains that cerebral palsy affects each person differently and shares his own experience of being a premature baby and using an electric wheelchair. Peter credits his strong sense of self-worth to the support and encouragement he received from his parents. He talks about the transition to living independently and the challenges he faces as an adult with a disability. Peter also discusses his advocacy work in areas such as disability representation in the fashion industry and accessible tourism. He attributes his passion for these causes to his parents' influence and his own personal experiences. Hi Peter, how are you this morning? Hello. It's lovely to be here. Thank you so much for having me, Leanne. Well, I genuinely feel like I'm really honoured because you've interviewed, well now you've got over 160 podcasts uploaded, haven't you? Yes. So I feel like the little learner in your wonderful presence. So thank you so much for coming on and sharing your journey and your learning and experiences with my audience down here in Geelong and everyone else who gets the broadcast. It's a pleasure. I'm excited to talk to you. Great. So, well, I'm going to first off ask you what is cerebral palsy and is the cerebral palsy journey the same for everybody who acquires it? So like every disability, cerebral palsy is different for each person. And I can only speak to what it's like for me. I don't know whether I'm the best expert on cerebral palsy, if I'm being really honest, because it's just one of those things that was never really sat down and explained to me what cerebral palsy was. I only know what it is from my context. So I was a premature baby. I was really, really tiny when I was born. I was under two pounds and I was born at 28 weeks. So I just purely didn't have enough time in the womb to develop. And that caused an issue with oxygen, which caused my cerebral palsy. And that means that I can't walk, stand or transfer, so I use an electric wheelchair. I have hoists in my home. I can drive an adapted car. So yeah, it affects me in lots of different ways and I'm weak on my right side. It's just one of those things when you're dealing with brain damage, which is what cerebral palsy is, with so much we don't know about the brain and it just happens to present in me in this way. Yeah. Thank you for explaining that to a lot of us who may not really know what cerebral palsy is or CP as we call it in the trade. And so obviously, you've never not known disability. Peter, you've got such a great bond, a very tight bond between your mum and dad. The three of you, it's quite apparent in listening to your podcast, the mutual adoration and pride that you have in each other is just wonderful. And you've never not known disability. To what extent did your help, did they help you form your strong sense of self-worth growing up in an ableist world? Your mum attributes a lot of your personal achievements and happiness to your innate sunshiny attitude from birth. What do you think of that? I would say my parents were fundamental in the way I have approached life, both in respect to my disability and just in general. I often say I won the parent lottery. They are just fantastic and both been so supportive and I feel really privileged in that because I know that's not the case for everyone. As somebody who was born in 1990, so the very start of the 90s, their education and perspective on how they taught me disability probably wouldn't fly today, but it certainly worked for me and I think the fundamental lesson that they taught me from day one is there's nothing wrong with having cerebral palsy. There's nothing negative about having your disability. You are you and whatever ability you have, you're going to strive and make the most of life. Great. And they will basically be your mum listening to your earlier podcast when I don't know if there's more than one that your mum was on, but I really loved one of the early ones with her. Her thing really to you was, get over it, let's just move on, let's make it happen or that's happened to you now, keep moving, don't dwell on it, but she didn't do it in a flick off kind of thing, did she? She supported you. She supported you through those experiences, didn't she? Absolutely. She still does because I'm still navigating disabled life today. I've never been this old with a disability before, so there's always challenges that pop up that I've never faced before and they're both really supportive to this day. I think there's a lot of perception that particularly with cerebral palsy, people only think about kids with cerebral palsy, but of course we grow into adults with lots of different challenges, but they've both been fantastic and I think it's one of those things you can't unscramble the egg, right? There's lots of different elements to what life is, but I'm very lucky and I always think if you're proactive to try and solve a problem in a positive way, that's the best you can do. Yes, that's fantastic. That's fantastic. As an adult, speaking about that, you now live independently and you are fiercely autonomous and a self-driven person. Was that a difficult transition or is it still a difficult transition or how rude, like kind of a shock was it to you when you moved out? It was always a topic of conversation since I was really little. Mum and Dad always really fostered my dreams and always never even entered my head that I wouldn't be able to live away from the family home and Mum and Dad were really wanting me to develop those skills to make sure that I was independent because as much as we don't want to think about it, they won't be here forever and I'm going to have to figure out life without them as much as I don't want to. But as far as the transition, it was a long process so I had lots of time to sort of get my head around it. From the time I started university, your non-disabled friends are moving out of home so I was sort of itching to keep up with them and to experience that with them. So I was very lucky. We looked for a place for me to live for, I want to say two and a half years, for a very, very long time. So by the time it happened and then we renovated the house to my needs, it was enough time for me to be more than ready to move out of home. Great. That's good and it was sort of the typical age then. Yeah, so probably it was a bit later, I would have been 26. Although there isn't that age now, is there? Yeah. Oh yeah, it really is. Who can afford to move out anyway? Exactly, that's right. Going back to your school days again, you just mentioned your non-disabled friends trying to kind of do all the, you know, trying to keep up with all their, or do the same thing that you would like to do, which is what they were doing. Did you have a lot of disabled friends growing up? I've actually never spoken about this. I did, but I didn't realise that they had a disability. So I had a group of friends, particularly in primary school, and I know on reflection there was a little girl that I was very close to that would have had an intellectual disability, but it wasn't framed to us like that at all. And I was friends with her for many years, but then transitioning into high school, to be really frank, I didn't. And they just, I was the only person in a wheelchair with an obvious disability in the entire school. So I had lots of friends, but I wasn't exposed to disabled culture in that way. Right. And do you think overall that strengthened your resilient sort of attitude? Or did you find your, the friends you had were even better friends because they bucked the ableist sort of trope? I don't know whether you'll agree with me, Leanne, but I think when you have a disability you've got a great, and excuse me, I'm going to swear, but you've got a great bullshit radar. You know, you can sort of read people straight away and you think, oh, you're comfortable with my disability, you see me, the whole me, you know. And I think that in a way is fantastic. I feel like I know my friends so well and they know me really well because there's not much filter really. I would say that it was positive in a way because I didn't define myself according to what cerebral palsy should look like or what expectations cerebral palsy had for other people. I was just purely being defined by me and my abilities. But in saying that, it took me a long time to want to start the podcast and be indoctrinated into the disabled culture because I didn't know anything about it other than my own experience. Yes, yeah. Well, we'll get a bit further to that point. We pretty well are. What's my next question here? You've got a few wheels rolling down many disability advocacy paths really, or you have had. Disability representation in the fashion industry and the media, accessible inclusive tourism, including achieving a Master's of Tourism degree. That was last year, wasn't it? No, I achieved my Master's degree almost 10 years ago. And now you've got the podcast. Yes. So what led you to each of those areas and how did you sort of start out with any of them at all? It's really an influence from both my parents and it's going to start being a drinking game by how much I talk about my parents in this interview, Leanne. But I have to say, mum and dad really were an influence with me as far as starting my higher education. My dad was an executive and a finance director. So I've grown up talking about board meetings and mergers and business and all those things and I've just always loved it. So I started a business degree and really found my feet at university and finally realised I was smart because before then I really didn't feel it. I didn't do very well in BCE at all. It didn't suit me. So that was a really pivotal moment for me. And then at my graduation, at my undergrad degree, I looked at all these people and thought nobody's going to hang me over everybody else. Everybody else is walking out with the exact same degree as I am. I need to do some more education. So rightly or wrongly, within three months, I enrolled into my Master's degree and I did a Master's of Tourism specialising in accessible tourism because that's always been a passion through travelling both in Australia and around the world and seeing how inequitable that industry is. How did you get a... Ten years ago, how was there a unit on accessible tourism? Well, to be really frank, there wasn't. I just thought of... I did a Master's of Tourism and then did my thesis on accessible tourism. Accessible tourism. You were afraid of your magic Peter Wand. I really tried. But then, to be frank, there were no jobs when I walked out of uni or wheeled, to be more frank. And nobody would hire me and I really struggled and I was lost for a long, long time. And I worked in all different areas, particularly in the disability space because, one, I was not interested and, two, that's where industry employ disabled people in general. Right. And then I was really unhappy in my job. I felt like there was no progression or anything on the horizon. I felt like I was stuck. And I had a beautiful boss that was taking over a maternity leave contract so they could probably be a bit more frank. And they said, Peter, what are you doing here? You need to use your voice. Go start and do something else. So within, like, three months, I took that advice, quit my job, which is a very privileged thing to be able to do, but that's what I did, and decided to learn how to podcast. My initial idea was to travel around the world and do a podcast while I was traveling around the world, but then COVID hit and I needed to pivot. And I'm so glad it did in a way because it's enabled me to connect with so many disabled people and really appreciate different disabled stories and how similar our stories are regardless of our disabilities. Yes. And you have got such a range of guests you've had already. And you don't sound like you're running out at all. No. There's a lot of us. It's funny about that. When we're 20% of the population, there's a lot of people. There's a lot of us. I mean, yeah. And going through so many, well, not only just disabilities, but the stages in our lives and experiences. And then when you put all the extra layers on, like whether they're women, men, indigenous, that sort of thing. It's just, yeah, you do such a great job in advocating there. And really, I mean, that's your master's, turning that into a thesis on accessible tourism. That's a big advocacy type of step to me. I feel like that's a kind of, you would like to think it was taken up maybe a bit more by the, I don't know, was it ever, do you think that it was ever seriously taken up by academia? I think like most thesis, they end up just sitting on a shelf and they're read by about a handful of people, if you're lucky. I'm very proud of that piece of work. I probably would be horrified by the lack of, sorry, by the amount of ableism that I would be talking about without me even realizing that ableism existed at that stage of life. But yeah, it's always been a passion of mine. Yeah. Oh, that's so wonderful. And you did manage to go away, too, a couple of years ago to Spain? Yeah, I went last year. It was a very belated, very, very belated 30th birthday trip. So yeah, we went through Europe and it was beautiful. It looked wonderful. And I know there's quite a few accessible parts of that. Well, I don't know personally, but I've read and seen. And your great blogs helped learn about that as well, how much accessibility there is. It gets surprising. So you really felt the beginnings of advocacy and social justice. The steering, I guess, was you really started with the sort of podcasting. Probably when you were pushed out of mainstream, I guess, like being accepted in mainstream jobs and in mainstream areas, it sort of pushed you into our community. And the education that you gained from that as well about the ableism that you were living with up until then. I don't know whether I'd term it as pushing. I think the people there were as supportive as they could be. But I was just in the wrong industry for me, I think. I'm not the sort of person that can sit at a desk and do the same job every day. I'm inherently chatty. I want to know everybody, what they did on the weekend and all those things. I was that annoying person in the office. So I think I just ended up where I'm supposed to be. That's fabulous. Good on you. All right. Let's go to your day-to-day functioning or living a little bit. And I know you've had one... We were just talking before about each week, if not even each day sometimes, there's always some issue that comes up when you've got a disability. Whether it's equipment or whether it's trying to go somewhere or whatever it is that doesn't work out. And I know you've had at least one malfunction with your ceiling hoist, which you overcame with grace and a little bit of frustration. Do you get times when everything is just too difficult? And what's your solution to restoring your equilibrium when that happens? It happens more than I would like it to, like everyone I think. Things break down when you rely on machines for your life and can be so frustrating. But also remind me of my vulnerability and how reliant I am on people as much as I don't want to be. It often sort of puts me in a tailspin a little bit because I often think, what am I going to do? I need another support system when mum and dad aren't here. I don't want to have to rely on friends because I think that's too much responsibility on them. I think they're my friends and that should be enough. So it's thinking about in the future what sort of support workers do I need and making that decision of when that's right for me to move forward. But it happens all the time when something goes wrong. Sometimes I feel like something happens maybe every two months or something like that. So on my really bad days, to be honest, I'm just one of those people, I leave my heart on my sleeve and I cry. So I have a really good cry often by myself, a good sob and then I might put an alarm on my phone and once that alarm goes off, no more crying. Right. So you give yourself permission and then you keep going. Kudos to you as well for keeping on striving for independence. Because it would have been easy, wouldn't it, just to say, I'll stay with mum and dad for the rest of their lives and we'll just see what comes up as things go on. I just want my life to be easy and not have to put up with this rubbish that keeps popping up for me. Has it ever wavered that much where you've just gone, I just want to chuck it all in and go back to mum and dad? Has it ever breached? I mean, I think when we all are in that state, we think, oh, this is too hard, I've had enough. I don't think it has to be disability related either. I think we all have those moments of like, for goodness sake, could the universe just give me a break? I know, but it definitely happens, doesn't it, a bit more? Yeah, but never permanently. I know in my own self how much happier I am living independently and I also know how much joy it gives my parents as well. To be frank, having to have your adult friends over to your mum and dad's house is awkward and it's such a privilege to be able to say, you know what? If I want somebody to turn up with a bottle of wine, it's my decision and nobody else has to know. That's right. That's right. It's really, it does make a big difference. You've got the warm, candid, authentic approach to your social media and your interviews. Is that something that you work to achieve or a reflection of who you are every day? I think I know the answer to that, kind of. I do often ask people who know me away from Instagram and before the podcast, like, am I the person that I represent on Instagram? And I'm pleased to report that most of the time they say yes. Sometimes they say I'm a bit louder in my personality because I can be quite quiet when I'm by, you know, I'm quite reserved in some ways. But I think it's just, I look at the camera in my phone and I try and visualise people sitting in front of me like they're mates with a coffee in front of them, just wanting to hear how I am. And that's, I really try and feel that human element. I never put filters on my Instagram ever. I just sit and talk and sometimes I think, oh my God, Peter, you're not interesting and you're bad and no one cares. But that's fine. As long as I just pop up and say, good morning. I hope you're having a good day. You know, and some days I'm having a great day and some days I'm not. I try both. Oh, that's really good. And it's great too because you've got quite a few followers now. So, I mean, all we have to do if we're not up for whatever you're talking about is like, you know, just use your thumb and, you know, move aside. And a lot of times it might surprise you as to how many people are actually interested and then resonate with something that you thought wasn't even that, you know, interesting to begin with. So, it's really worthwhile. It really does help maintain a community and strengthen that, you know, the community of people going through similar things. Yeah. And I sometimes think the mundane part of life is the most interesting. You know, and particularly someone who lives by herself, I constantly am looking to see what other people are doing because I sort of think, oh, while I'm loading the dishwasher, what's Leanne up to this morning? Like, I'm keen to know how you are. I think it's like having friends that you've never met in a way. But, you know, in some ways I know them better than my friends know me. Yes. Yeah, that's true. On Friday, I liked your little angle, setting the phone up next to the tap, the kitchen tap. And we listened to you while you were rinsing your... Oh, no, making your cup of tea. That's right. Yeah. Yeah. So that was... I thought that was really fun. So, your podcast is wonderful, the I Can't Stand podcast, as I've said a few times now. And how... One of the things I thought about, which is something that I, after, you know, a few shows up my sleeve, and I'm hoping to be interviewing more and more people that have disability and also live around disability and that sort of thing. How have you found interviewing people with disabilities and lived experiences that are quite different from your own? Have you had any awkward moments with that at all? I wouldn't say awkward, because I always send the questions prior, so they know what they're going to be asked. And I always send the finished edit to the guest before it's published to make sure that they're happy as well. I really want my guest to feel comfortable and confident in what they're saying. And sometimes I don't agree with what they say, but it's not my place to disagree. They're sharing their story and their perspective, and I'm just happy to help them utilise their voice. That's really lovely. Really lovely. So who has been your most memorable interviewee, and why? Or is there only one? Well, no, of course not. But there's one that sticks in my memory, because I've never been shocked in an interview except this one. And it was a good shock in a way, but it was Dr. Dinesh Palapanna. I don't know whether you know who he is, but he is a doctor who has paraplegia. And he was describing his car accident. And the way he described his car accident that resulted in his disability just floored me, because I said, you know, do you struggle with trauma? Often living with disability is really difficult, and I'm always really cognisant that, you know, talking about these things can be hard for people, and I don't want to dig up trauma for the sake of it. But he said it happened in slow motion. And please, I'm going to misquote him. Please go listen to the episode. I'll give you the link. But it happened in slow motion, and he decided that he would enjoy it. He said it was like being on a roller coaster. It was silence on that one. Because what other choice have you got? Well, yeah, exactly. But I can't say that I would be that well-rounded of a person. You know, I've never been in that situation, so I don't want to, you know, give myself too much misjudgment. But I don't think that would be my first reaction. No, no, that's right. That's a very sanguine or something approach to it. Yes, that would be great. I'll go back and have a read. I'll listen to that one too. I have read quite a few, but it's hard to sort of catch up with 100. There's a lot of content. 160. Yeah, that's great. 160 plus. So, yeah, you have discussed relationships, mental health, disability pride, human rights law, disability employment, accessible travel, so much more, so much more. And there's always a take-out. Like the ones I have watched, listened to, sorry, there's always a take-out or something that I can resonate with, whether it might be a quote from you or a quote from the interviewee or, you know, their story. It's always very interesting. Are there any that come to mind to you that are particularly profound or enriching for you? This is going to sound so trite, but every interview that I do, I always take away something. I always learn something, and I've really realised that I'm the sort of person that I need to learn something all the time. And disabled people, to me, and I'm biased, we're the most interesting people because we've got a story. And it's like, even for me who was born with my disability, I don't know what it's like to gain one later in life. How does that impact you? How does that impact your relationships, your loved ones? How do you deal with your mental health? Like everybody's perspective to me is just so inherently interesting that I just love my job. Yeah, and it really shows. It absolutely shows. So, as I've said, all your chats are enjoyable and educational and sometimes downright humorous. One of your more recent ones with Madeline, the comedian. Yeah, Madeline Stewart. Yeah, Madeline Stewart. Which one has potentially changed your opinion on something? And which one has been the funniest episode yet? The funniest episode, if I do say so myself, and you shouldn't recommend yourself. Should you, Leanne? But I got a question back in the day when people were still sending me questions of what it was like to live with a disability. And they asked me what it was like to be drunk with a disability. Oh, that's funny. When you have a disability that affects your motor function, alcohol really affects me. So I just decided to get progressively drunk while recording the podcast. So that was really fun. You did that very cleverly and I just love your giggle. Thank you. Yeah, that was a really funny one. Well, I come to my final question. It's kind of similar anyway. Which of your 164 podcasts would you recommend a new listener start with, Peter? Oh, that's such a good question. You know, I think it's really hard because everybody has their own interests, right? And the catalogue is so big. I'm very confident that everybody will find something that will resonate to them, even if they don't have a disability. But my very first episode, Why I Don't Leave the House Without Lipstick, I think is a really good start because I've definitely still got my training wheels on when it comes to podcasting and interviewing and I'm sure the audio isn't as crisp as it is today. But that really gives the outline of what the podcast is and who I am and why I started it. Fantastic. Thank you so much. It's been so beautiful speaking to you. Can you please tell all the listeners where they can catch up with you on the socials and where they can listen to you on your pod? Of course. So the I Can't Stand podcast is published every Tuesday. We're now in Season 4 and it's on Apple and Spotify and you can follow me over on Instagram. My handle is at Peter Hook, spelt P-E-T-A-H-O-O-K-E. Thank you so much, Peter. Thank you. It was such a pleasure talking to you, Leanne. It's just so fun. I love it. It's great that I actually got to talk with you and I'm not just watching you kind of thing. So thank you. I really love this time with you. It was really great. And it was a pleasure not to have to ask the questions. It was nice to answer them for once. So thank you. I hope I did it right. I was trying to remember what we talked about at the beginning because that would have been good to continue but I can't remember what it was now properly. Can you remember? We were talking about... I think we were talking about... Oh no, I'm going to make it up. I don't. Yeah. Anyway, let's have a space for like a couple of seconds and then can we just quickly do the Inspector Gadget. Of course. And I loved what you said about that they provide your... What was it again? They provide... What did you say? Your independence. That really struck me. So I'm going to say that. Where are we? Yeah, here we go. All right. We'll just do this like just five minutes. Is that all right? You've got time. Yeah. Thank you. All right. Here I have Peter Hook who you have just recently listened to, Peter Hook from the I Can't Stand podcast. Peter Hook has cerebral palsy and I asked her what gadgets that she would like to talk about or gadgets she would like to talk about on the Inspector Gadget. No, I'm going to start again. I'm getting... Yeah, start again. I'm getting all stupid. All right. Da, da, da, da, da, da. Welcome back to Inspector Gadget. I've got Peter Hook again who is from the I Can't Stand podcast. She has cerebral palsy and was very generous in helping me with the gadget, with one of her gadgets today. But her answer, when I asked her which gadget she would like to talk about, she answered with my ceiling hoist, my converted car, my wheelchair, a pair of barbecue tongs, an extra long shoe horn and Thermamix. But what I really found interesting, she added, they define my independence and that was really quite profound I thought. So today, I kind of thought about maybe your ceiling hoist to talk about but what do you think, Peter, would you like to talk about? Let's go with the ceiling hoist. It's pretty fundamental to my everyday. Okay, great. How does a ceiling hoist work? I've got a lift hoist. It's manual and slides around the room and can go from one room to another. How does a ceiling hoist work? Well, it's sort of in the name I suppose. Like there is a hoist within my ceiling that's been put in my ceiling so it takes me from bed to the toilet, to a shower and into my wheelchair or different versions of whatever, wherever I'm going in that particular moment. So without it, I wouldn't be able to do any of those things without assistance but it means that I can live alone and fully independently. So I get myself out of bed every morning. I put myself on the shower. I shower myself, put myself back in the wheelchair with the hoist, put clothes on, then use the hoist again to pull up pants or skirts or whatever I've got on that day. I go to the toilet and then I can start my day. And do you need a remote control kind of hanging off the sling because obviously you need a sling to sit in at first. So you roll on bed, you roll yourself into your sling and use a remote control? I actually sleep on my sling. So yeah, I sleep on my sling because I just find that some days you're so busting to go to the loo and I don't want to not get to the loo. So I sleep on my sling and there's a, as you say, a remote connected to the hoist that's on a cord. Right. Okay. Okay. And as you found that, that's brilliant that you are able to do that. So without that, without a ceiling hoist, you would definitely need help in the morning, right? 100%. I can't stand or transfer or do anything really. Once I'm in my wheelchair I'm pretty independent but yeah, it completely defines my independence and I've had a ceiling hoist in and around my life since I was about 13. Okay. So sitting here at 34, it's just an everyday thing that I use now. That's fantastic. I'm so glad for you. And it's worked, it's very reliable, isn't it? You had one, I know, pretty awful experience with it. Have you had any others? Oh, there have been lots. I think when you're defined, like being defined by equipment and you use it every day, and I use mine a lot, the technicians are always a bit shocked because it's like, well, how often do you guys go to the toilet every day? Yeah, that's right. You know, and it's the only toilet I can use in the house and, you know, if I'm not at home I generally don't go to the toilet. So the hoist really defines my life. So it can break down like everything else but I service it like I'm supposed to service it and I try and look after it as best I can. I know, I'm sure you would, yeah. Well, that is so fantastic. Thank goodness for sailing hoists and hoists in general because they really do, like, they're actually fundamental to our independence, as you say. They really are. Absolutely, and it also means that I'm not as reliant on my friends and family. So, you know, I don't have to have support workers here all the time to help me. I don't have any at the moment at all. I haven't for quite a few years now and without the hoist that wouldn't be possible. Great. Love your work. Everybody listen to Peter at the I Can't Stand podcast available on wherever you get your podcasts. And thank you so much again for coming in, Peter. Thank you. Thank you, Leanne. It's been such a pleasure. I thought I'd do that because I might not do it on the same episode. So when I edit it I'll send both recordings to you. Great, thank you. So you can have a laugh at mine. I am pretty terrible still, but I'll get better too. Oh, we all get better. And you know what? Some days I do the interview and I think I'm just going to keep their side of the audio and I'm going to re-record my side of the audio and nobody will know. I wonder if you do that sometimes. Sometimes I do, yeah. Yeah, that's the benefit, isn't it? I might have to do that maybe in the intro or something. Yeah, I mean, particularly I've been nervous in some of my interviews and I'm like, there is no way anybody is going to hear me sound that nervous. Oh, that's good. Oh, thank you. You're great. Have you got a busy day coming up? I did a podcast interview this morning and I need to finish doing the podcast for the publication tomorrow. So yeah, Mondays are always pretty busy. Yeah, good on you. Good. All right, well, keep smiling. You too. And staying beautiful and I look forward to seeing you at the socials. Lovely to see you, like not in person, but a lot closer than we normally do. I know. It's so nice to talk to you. Thank you so much for your time. I truly appreciate it. Oh, you're welcome any time. All righty. Have a good day. See you. Take care. Bye. Bye. Bye.