Laura's journey of self-discovery, from confronting internalised ableism to wholeheartedly embracing her disabled identity is a great conversation. She also powerfully highlights the power of inclusive language and the importance of disability representation in literature.
Connect with Laura:
Instagram: https://www.instagram.com/thisgirl_writes/
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:02] Hello and welcome to The I Can't Stand podcast. The podcast answering your questions on what life is like when you have a disability. I apologise that there wasn't an episode last week I was feeling under the weather. But we're back. This week I have Laura Pettenuzzo. Laura is a disability activist who has cerebral palsy and psychosocial disabilities. She works tirelessly in the space and is passionate about writing words and inclusive language. I loved talking to Laura and to be honest, I really struggled to edit it down because she's such an eloquent person. So without any further ado, let's hand over to Laura.
Laura [00:01:02] My name is Laura Pettenuzzo. My pronouns are she and her. I am a disabled young woman and I am lucky to live on Wurundjeri country.
Peta [00:01:13] It's such a pleasure to have you on. Laura, I'm really interested in what you do. You're a very accomplished person. You've worked for many different places, including Skype, Women with Disabilities, Victoria Youth Disability Advocacy Service. Or why does you're currently part of the Victorian Disability Advisory Council and also working with children and young People Australia? What are those organisations being so disability focussed, taught you about yourself and your disability identity?
Laura [00:01:49] Honestly, I feel like working with disability organisations has taught me everything that I know about my identity as a disabled person. I have been disabled all my life. You know, I was born prematurely and had cerebral palsy and that was something that I always knew about myself. But I never really used the label of disabled. Like I remember tentatively using it once when I was little, and I said to someone, Oh, you know, my legs like they shake. And, you know, it's really hard for me to walk. That makes me disabled. And then they kind of laughed at me and said, Lara, don't say that you're not disabled. And so until I started working at YDAS, I'd kind of internalised that. And I was like, Oh my goodness, I can't believe I did say that. It felt for a long time as though disability wasn't something I was allowed to own. As though I wasn't. And I'm using quotations here disabled enough. So as a consequence, what that meant was that I wasn't also recognising like my access needs and I wasn't, I guess, you know, looking after myself and honouring what my mind and body needed. Coming to join disability organisations specifically White US in 2019 was the first time that I was actually able to say that yes, I was disabled. But also that wasn't something and it's not something that I need to hide and it's not something that I need to be ashamed of. In fact, it is in some ways one of my greatest assets because it gives me a unique lens through which to view the world. But it's also taught me a lot about just accessibility and inclusion in general. Like, I am quite ashamed to say that before I started working in disability. Like, I didn't know that text was a thing. Alt text is, I guess, a description of an image that you can kind of shows up in the back end for people who use screen readers. And, you know, I didn't have any understanding of the etiquette around like Auslan interpreters or, you know, I didn't know any Auslan. And, you know, disabled people. We make up nearly 20% of the population. And I feel like I missed out on so much by not understanding that part not only of myself, but of the world.
Peta [00:04:27] Well, congratulations for you. You know, really stepping in, if I can use that word, even though I find myself stepping into your identity and being proud of being a disabled person, that's really a great. I'm fascinated to know if you weren't comfortable to identify as disabled before. What made you gravitate towards working in the disability services area?
Laura [00:04:56] Oh, yeah, good question. So I wasn't comfortable identifying with disability as someone who was physically disabled. But I've had psychosocial disability also for most of my life. I was really lucky that, you know, my parents supported me to get therapy from a young age and I guess get the help that I needed with my mental health challenges. And so what that meant was that I started working in the lived experience based around mental health, and that exposed me to conversations around disability and the NDIS. I was living with my best friend in 2019 and they started noticing because we were living together, that like walking was a real struggle for me and I couldn't walk really far. Or if there was a choice between like stairs and the lift, I would always take the lift. But I never really wanted to ask for concessions. And they'd said to me, Laura, you're allowed to play the card. Like that was specifically the phrase that they used. And they were like, You know, I'm not going to judge you. You know, if things are going to help you, you're allowed to speak up and and ask for them. That conversation and those conversations that we had were really, really pivotal. And like I remember when I did the application for the job at White House, I said to my friend, I was like, Do you think I can apply for this job? I don't know. Like I'm not really disabled. And they were like, Laura, yes, you got the job. And yeah, so I guess it was a combination of my understanding of myself as someone with mental illness, but also my growing understanding that there are people who they were and they are people who understand and accept me disability inclusive. I often think about a previous workplace and one of my co-workers. Often I would say things and she would stop and she would be like, Laura, would you make that judgement about one of your other friends who's a wheelchair user? Would you make that judgement about someone else who had a mental illness? And I'd be like, Oh no, you're right, I wouldn't. There is a discrepancy. There is. And there continues to be a discrepancy between the grace I'll unthinkingly offer other people and the grace that I really, really struggle to offer myself.
Peta [00:07:40] Yeah, I think a lot of people listening will really relate to what you just said often where our worst self critic and I'm the same, I often think God, like I can be quite hard on myself, particularly around getting work things done. But as somebody who has cerebral palsy as well, Laura, I'm really fascinated to hear about what it was like for you when you were little because your perspective from your cerebral palsy. What I'm hearing is quite different to mine. Like I've been quite comfortable in advocating for my needs. So I'd love to understand where that came from and how that might be different to maybe other people listening.
Laura [00:08:21] I guess when I was little, like my C.P manifested differently to what it does now, I suppose you'd say. So I have spastic dysplasia, so that means that my safety vastly affects my legs and it mostly affects them in terms of spasms or involuntary muscle movements. On any given task, I will expand or use 4 to 5 times the amount of energy as an able bodied person. A lot of the time, particularly as an adolescent and a young adult. I would kind of think to myself, Oh my God, Laura, why are you so tired? Like, you know, other people can do this, this and this. Why can't you do this? Those attitudes from like when I was growing up, really impacted a lot of the way that I saw myself. You know, like I would have to see a physio like once a month and, you know, like I had to wear affairs which are like ankle foot orthotics for people who are not in the know. And I hated that so much. I mean, I was lucky. I could choose like a design, and they had, like, little pink butterflies on them. Very cute. But even so, I didn't like it. They hurt. And also, it was quite obvious when I was wearing them and I didn't like being different. Like I wanted to be like everybody else, if that makes sense. I wanted to. To fit in, and I wanted to, I guess, fit the mould of able bodied person, able bodied girl. You know, when I remember when I was speaking to this friend who in 2019 was the like an ally, like we'd been friends for a few months and we were like, we'd gone out for dinner and like, somehow, like disability came up and I was like, Oh, yeah, I have cerebral palsy. And they were like, What do you mean? It's like you're doing, you know, this the way that I walk. Like, no, never noticed. I think I kind of in some ways had that privilege. I'm aware that using the term privilege in that context is and can be quite controversial because for a lot of people with invisible disabilities, it's not a privilege to pass is actually a barrier because our access needs aren't recognised. Like, you know, Al and I say I say Al because my mental illness is mostly invisible. It means that people can kind of doubt or question why we might need the the access needs or things that we're requesting. All of which is to say that my understanding of myself when I was little really shifted as my, I guess, disability. I don't want to use the term worsened but changed even when it started getting more painful for me to walk. And I started fatiguing a lot more easily. I was really resistant to using a wheelchair. I think because of that experience that I'd had when I was little, where I was like, on or you're not disabled. It took, you know, talking to several of my friends who are wheelchair users who were like, you know, Laura, do you judge me for using a wheelchair? And I was like, No, of course not. And they were like, okay, and what a wheelchair help here. And I would have to be like, Yeah, it really would. My experience and my right to live a life with minimal pain was something that I could and should value more than, you know, the arbitrary notion of normal. And again, I'm using eight quotations, all like conformity. When I did come to that realisation and I did start using my wheelchair, my darling Stella. My life absolutely changed. Like, I can go so many more places. It's so wonderful. Every time I'm in Stella, I'm just so happy.
Peta [00:12:51] Before I talk to you about internalised ableism and explore that topic, I just want to say I UFOs totally sucked. I am with you all. Oh, I wore mine for I think from the age of six until about 1718 to a very, very long time. I have indents in my legs from them, from wearing them. I hate that. And they were so hot in summer.
Laura [00:13:20] Oh, my God. They get all sweaty and it's just so gross.
Peta [00:13:25] So going back to internalized Ableism, it's a process for me as well. I'm still working on it completely. It's a day to day thing. How are you finding it now, particularly as you are so connected to the disability community and helping so many people with disabilities in your professional work?
Laura [00:13:47] Interestingly, I've observed a bit of a difference or discrepancy in my understanding of an ability to challenge internalised ableism around my physical disability as opposed to my psychosocial disability. I think with cerebral palsy, it's a little bit easier for me to kind of challenge the internalised ableism. I guess because for the most part, the effects of visible and challenging the internalised embolism, you know, it can be things like I'm going to use my wheelchair today. And, you know, I'm not going to feel bad about that. You know, it doesn't mean that I failed. In fact, it is a triumph. Whereas internalised ableism around my mental illness can often look like the notions of, I guess, in the beliefs that I'm a burden to the people that I love, particularly, you know, because of my anxiety disorder, I'm constantly seeking reassurance. Challenging those thoughts and doing that work feels, I guess, a lot more intricate and a lot more nuanced to unpack. But I'm working on it. Therapy is great and I'm very, very lucky not only to have the most, you know, supportive professional support system in terms of like physios and psychologists and teams, but also to have the most beautiful network of friends who I know will and do catch me if and when I fall.
Peta [00:15:31] Going back to your work at the Victorian Disability Advisory Council, I know you're really passionate advocate and that's been really clear with this conversation. But what areas of advocacy for disabled people are you most passionate about at the moment?
Laura [00:15:49] Well, the number one issue at the moment that I will not stop banging on about is the ongoing pandemic. COVID is not over. It would be great if it was, but it's not. And we know that long COVID can be debilitating and life altering. COVID infections increase our likelihood of heart attacks, of strokes, of blood clots of so many, I guess different health challenges and issues. The fact that so much of the world has gone back to, quote unquote, normal is a form of embolism. If there is something that we can do, you know, if wearing a mask, if doing a rash, if opening a door is is going to keep people safe, why wouldn't we do that? The only way that people are going to recognise the impact of the ongoing pandemic is if we talk about it.
Peta [00:16:51] I'm really conscious that I want to get on to something that you're very, very passionate about, and that is writing and words. So where did that passion start for you?
Laura [00:17:03] I have been a passionate reader for as long as I can remember. My passion for writing, though, and using words I think took a little bit longer and emerged a little bit differently. Like I have memories of in primary school, struggling to like form, like letters and like, put them in the, like on the margins and things like that. And I think that has something to do with like sleep and fine motor skills. But the first time I remember understanding that using words allowed me to take like something where there was nothing like take a blank page and and create something. Was when a primary school teacher asked us to do a recount of our weekend. And I wrote several pages about going to visit my donor and. No, no, because they. No, no, no, no. Like grandma and grandpa in Italian, I'm like, No, no. I used to take me to the garden and show me all the vegetables and the fruit and the beds. And I just remember having so much fun writing like that recount and just thinking, Huh, this is fun. Like, I love this. Even now, like I still try to handwrite. I have been doing the oddest way, which is a creativity program, I guess you'd call it. And one of the tasks is that you are supposed to handwrite for 30 minutes or three pages every morning. That's way too much for me. Like, no. Like one of the first sentences that I always end up writing is my hands hurt.
Peta [00:18:49] You are saying that your love of books started really early and this is an area that I need to improve my knowledge. So hopefully you can help me. Laura But are there any books that have featured disabled characters or disabled stories or been written by disabled authors that you've really loved? Because I'm all about representation, and representation doesn't stop in just the media. It includes literature as well.
Laura [00:19:19] Absolutely. The representation of disability in literature is one of my favourite topics of all time ever, so I feel like I was born to answer this question. Okay, So if we're thinking about, like, non-fiction. The first one that jumps to mind for me that everyone needs to read is The Shape of Sound by Fiona Murphy. Oh, my goodness. It is the most lyrical, like the most beautifully written book. Like Fiona's writing is almost poetic, rhythmic. It's got a sense of musicality that I really envy and I wish that my writing had. It is a memoir of hearing his experiences with deafness. Similar to me, she didn't really identify as deaf for quite a while and recognising that she was deaf and was part of this community was really life changing for her. And so I also really, really resonated with that. Highly, highly recommend that book. Other non-fiction that I would recommend, Say Hello by Carly Findlay, which I'm sure everyone's familiar with that Carly's advocacy absolutely amazing. I reread Say Hello every December around International Day of People with Disability. Just whenever I need a little bit of a bolster and a boost and a reminder of the wonder that is disability, pride and the disability community. But others that I would recommend include Show Me Where It Hurts by Kylie Maslin, which is a great representation of invisible disability and a really engaging memoir. Again. Yeah. I've also got a couple of like middle grades that I want to recommend because I think middle grade is particularly important because so many of our attitudes are formed when we're children. And if we can introduce children to the concept of disability and normalise it when they are that much younger, then it will, I guess, potentially prevent or minimise the development of those harmful attitudes when those children become adults. Kate Foster is a brilliant autistic writer. The bravest word is around mental health and mental illness. But Kate's other book, Pause, features an autistic main character, also a middle grade book, and definitely recommend. And then I would also recommend The Amazing Edie Eckhart by Rosie Jones. Rosie has cerebral palsy, and the main character of the book also has cerebral palsy. So I really related to that one.
Peta [00:22:13] I have to say, Laura, I have now done, I think, say 130 of these interviews. And I have never had anybody saying to me, Well, Tony, it's been so lovely. Oh, for those obviously, you can't see Laura right now because this is a podcast. But she's been so I guess as I as talking with she's been great encouragement. I'm really interested and I want to ask you why inclusive language is so important.
Laura [00:22:47] Inclusive language is important, I think because language has the ability to to hurt us, but also to heal us. For me, the message it sends is, You're welcome. It says you are safe here and you belong here. And, you know, people can be dismissive and say, oh, it's just words. But words can and do change the world every day. So a definition would be like the use of words that are positive and affirming and uplifting. And the deliberate and intentional omission or not using words that are slurs or exclusive or demeaning. So, for example, you might ask someone whether they prefer person first or identity first language person, First person with disability. Identity first disabled person. You know, it might also be checking in with someone about their pronouns and making sure to gender them correctly, show them that you respect them and their identity. It might also be, you know, if you do accidentally use a slur or say something ablest, you know, earn it, correct yourself. And I aim to not do that again. It was, you know, words and exclusive language and alienating language that really contributed to a lot of my internalised ableism. And by that same token, it was words and inclusive language and having the language to understand my disabilities and my experiences that and this is going to be really cliche, but it was it was that understanding and those words that set me free.
Peta [00:24:38] Thank you for listening to this week's episode. I hope you enjoyed it if you did. Can I encourage you to leave a writing interview on whatever podcasting platform you listen on or share the show on social media or in real life with a friend? It all helps more people find the podcast. But until next week. Have a good one, guys. Bye. I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures, but especially to the Bunarrung people where this podcast was recorded.