Zoe Simmons: The Disability Community Saved My Life
In this remarkable episode, Zoe Simmons discusses her journey of discovering that she is disabled. The challenging path Zoe shares her struggles with stigma and ableism from both medical professionals and greater society.
This is definitely an episode where it made Peta proud to be a part of the disability community.
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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. My name is Peta. I have cerebral palsy and I'm your host. This week. I have Zoe Simmons for you. Zoe is a disability advocate, writer and journalist. She's been so open about her autism diagnosis, her chronic pain diagnosis, her mental health, and the other disabilities that she lives with every day. This was such an open, honest, raw and great chat. So without any further ado, let's get into it.
Zoe [00:00:53] Hi, my name is Zoe Simmons and I am so excited to be here. Thank you so much for having me.
Peta [00:00:59] Oh, that's really lovely. Thanks, Zoe. So if we don't if the audience have never known you don't know anything about you, how do you normally introduce yourself? Do you talk about your disability Normally when you introduce yourself to someone?
Zoe [00:01:12] I do now, because I grew up my whole life not knowing I was disabled. Even I have multiple disabilities. I am now like very open with it, probably too open. And I blame that my autism, but how I would generally describe myself would be as a journalist, copywriter, editor, speaker, author and disability advocate. Basically anything that involves words and making a difference I am really excited by.
Peta [00:01:41] So you said that you didn't always consider yourself to have a disability. Welcome to the community. I know you've been in it for a while, but I still think it's important to welcome people into the community. How did you feel about becoming disabled when when you were first told? Was it? Presented to you as a tragedy, or were you one of the lucky ones that had some really supportive medical professionals that were like, Congratulations, you know this about yourself?
Zoe [00:02:10] Technically, I've been to say wood my whole life because of autism. I've always been autistic, so I've always been disabled. And I didn't realise that until last year. So that's been a bit of a fun whirlwind. I've also had mental illness most of my life. I can't tell you when that started, but as long as I can remember, I had symptoms of bipolar and anxiety. It wasn't until last couple of years, last five or six years where my chronic pain and chronic fatigue symptoms and all the other things that go along with that have gotten worse. I started investigating that. I've realised that I'm disabled, but I didn't feel like I could say that. I didn't feel like I was disabled enough, especially because my disabilities are invisible and dynamic and we have so much stigma against them and calling yourself disabled. So the only reason that I realised I was disabled is because of disability advocates and people, people like you, people like Holly Finley and Tara moss and so many other amazing advocates with varying types of disabilities who are like, you know, if you have something that affects you, it's a disability and you're allowed to say that. But when I started mentioning it to health professionals, they were very stigmatising. They were like, Oh, don't call yourself that. Oh, you're not disabled. It's not it's not a bad thing. So I definitely encountered a lot of stigma and a lot of ableism in the medical industry and society as a whole. But the disability community literally saved my life. I was in such a bad place when I didn't know what was happening to my body and I was just in so much pain and so tired all the time. And Ty doesn't even describe it. It's like that soul crushing can't function, can't speak like the level of tired where you can't even figure out how to charge your phone. I just felt like my world was collapsing and none of the doctors could tell me why. All of them told me it was in my head. It's been tricky. Definitely glad for lived experience and non stigmatising lived experience.
Peta [00:04:11] So tell me about self-acceptance. How is that process been for you?
Zoe [00:04:16] It's been hard because growing up we get so many messages of stigma and ableism and we can't help but internalise that, especially as those messages keep getting repeated by society, by medical professionals, by pop culture, you know, were celebrated for pushing through it even when it harms us. You know, even people that care about you can really perpetuate the stigma and this ableism, and it can be really harmful and hurtful. And it's a lot to work through it. It's a lot to understand that it's not you that's the problem. It's society. That's the problem. And, you know, I have worked really hard on it because I've had lots of people in my life that haven't really been supportive of my disabilities. They've been like, Oh yeah, you disabled, but you're not allowed to use mobility aids that make it easier or you know, you're not allowed to rest or you know, you still have to work full time hours and run marathons. And if you're not doing that, you just don't have a can do attitude. Literally been told that by people that apparently cared about me. I know that often they have good intentions because they want you to be better, but they just don't understand the realities of what it's like to live with disabilities and chronic illness and energy impairments that you just can't. There's definitely not enough understanding about these things. So I do often really struggle with internalised ableism. Like I recently started using a walker as well as my wheelchair and a walking stick, depending on what I'm doing and how I'm feeling. But even then I was like, Oh no, I don't need this. But then I tried to, you know, go with that and I was like, Oh my God, this is the worst pain ever. I do need it. And a message I'd really like to keep repeating to myself and others, because I think we all need it is if it helps you use it. Even if it helps the tiniest bit, you use it. You don't have to explain to anyone. You don't have to push through. You don't have to be this idea of a non-disabled, neurotypical person. You don't have to fit inside their boxes. But it's very hard because most of the world wants you to fit in those boxes. So it's a constant struggle. But I do my best and I have found acceptance, I think, as much as I can. It's still hard to accept. It's hard to accept that I can't just go out to the shops. It's hard to accept that I can't just, you know, have a spontaneous. And I'm like, Oh, let's go to the city, because it's there's so many barriers. I just think that, Oh, am I tired enough? How do I get there? If there's public transport, will someone actually be there to let me off the damn train? Will I fall in between the gaps again? Which has happened? You know, will someone hurt me because I'm more vulnerable being in a wheelchair or something? There's just so many things to consider that non-disabled people don't.
Peta [00:07:06] When you're out and about and people see you, particularly in your wheelchair, how do you go about explaining your disability, particularly to little kids? Like, I have certain techniques that I employ, but I also I'm really interested to hear what you say and how you explain it to little kids, particularly as your disability. A lot of the time is hidden.
Zoe [00:07:31] I mean, I don't really get that many little kids coming up, but if they do, usually they comment on my hair and like, wow, that lady has such a cool head. And I do know there's a lot of parents be like, yeah, cool hair and explicitly ignoring the wheelchair. So I haven't had that direct conversation yet. I also probably don't leave my house enough to have those conversations as much, but explaining it to other young family members, for example, I just say, you know, I am in a lot of pain and this helps me go into the community. I use different mobility aids on different days depending on how I'm feeling. And that's okay. You know, disability doesn't have an age. I do love it when I see someone else losing mobility. I just feel like it's like a club. Like, Yeah.
Peta [00:08:20] Absolutely. For a very cool cloud that are very used to all the boring jokes. And no, we don't need a license to be at all the things.
Zoe [00:08:29] Like a lady in Mecca that literally clapped for me because I reversed in my chair and she was like, Oh, how good? It was like, Do you clap for people walking backwards?
Peta [00:08:39] Yeah, the patronise ation certainly isn't improving from my perspective, and I'm really sorry you went through that because it is so hard to sort of suck it up and be like, okay, that just happened, but I'm going to get on with my day.
Zoe [00:08:55] Like I went to an airport in July and the person like bent down and said, Well, hey, let me see, can you walk? And like then push my wheelchair without consent, touching me without consent, referring to me as wheelchair. It's just it happens a lot and it is jarring. And these little things may not seem like much, but I think they build up. They do make you feel like it's not a space for you, and that's really shit.
Peta [00:09:27] Clearly that person's frame of reference to a wheelchair is a pram. And it's like just because I'm sitting down like your child doesn't mean that I'm three and a half like your child. I'm an adult. Please treat me like an adult. And you've just touched on an area I actually wanted to talk to you about because I know that you wrote about your experience with air travel. And unlike me, you've had issues in the past. Considering it is a human right that is inaccessible, how do you think together we can help people better understand how to make it a more inclusive process?
Zoe [00:10:10] Firstly, they need better training on so many things like disability kinds of disabilities, how to talk to people, invisible disabilities and dynamic disabilities, and understanding. Just because someone looks like they're not disabled doesn't mean that's the case at all. Definitely an understanding for. Is it the hidden Sunflower Lanyard or something? Yes, I remember exactly what it's called, but you know, recognising that, but also recognising things like, you know, all the different things a disabled person might need to bring on a plane. Having disabled people actually working with you and in leadership and doing these trainings and listening to lived experience and advocates, because it's not like we're not talking about these things. We've been talking about the non-stop. So it's just it seems really poor form on their part that they're just not doing it and they just don't seem to care how they treat disabled people and like how they break mobility aids that can kill people like it has happened. And people are just like, Oh, it's not that important. You're just being dramatic. No. Like mobility aid to someone's legs. And regardless, disabled people, like any person, deserve to be treated with respect and care and dignity. And we just don't get that.
Peta [00:11:31] You're so right. Like I often and I talk about this quite a lot as well. How important it is for people with disabilities to also be working in industries that is inaccessible to us. Because if there aren't people in the offices going, Hang on, this isn't correct because of my personal lived experience and my perspective that able bodied people just can't have because they don't live our experience, then issues can't be resolved. I mean, I can't imagine how much more relaxed I would be if I knew that the person checking in, checking me and my flight had a disability. You've spoken a little bit and written a lot about the fact when you were little, you knew that you wanted to be a leader and you had a strong desire to be successful. How's your disability and being diagnosed with your disabilities redefined what success is for you?
Zoe [00:12:31] Oh, absolutely. And I do think being a young person and having this intense need for success and achievement was also probably feeling like I was less than and feeling like I wasn't enough. And, you know, being autistic or not knowing it. My previous idea of success just wouldn't work. And when I did get my my pain was bad. I had to leave my job. I couldn't work full time, I couldn't cook or clean. And I got really afraid that I would never be able to achieve anything again, because I do have this a really strong drive to achieve things and make a difference. Ever since I was a kid, all I wanted to do is make the world a better place and have this deep desire to create change and be a high achiever. But I also think some of that was probably me feeling less than, you know, being a young autistic person growing up and not realising you're autistic, but also feeling like you're out of place and like, you know, you have to do those things to prove that you're worthy of love. I had a really poor opinions of myself and I still battle against them. I still get shocked that people like me because I often do think, Oh, I'm horrible, I'm terrible, everyone hates me. You know, I'm a burden and all these thoughts, but my mental illness keeps telling me. And those things, I guess, drove me to always be a high achiever, often to the point of burnout. So I know what I do too much. I absolutely get worse symptoms and my fatigue gets worse. So it's really been about focusing of focusing on looking after myself and setting boundaries and listening to my body, even when it's annoying to rest when you don't want to. You want to do things. You can still be successful. You just have to do things a bit differently and have more rest. And also, I think not do as much free work that helps. You need to get paid.
Peta [00:14:23] I'm really interested to better understand how your disabilities interact with themselves and how they positively and negatively impact. So as somebody who has autism, how do you think that also impacts your other disabilities or is it completely separate?
Zoe [00:14:44] Everything obviously impacts everything. I definitely know my autism and my anxiety and my bipolar all feed into each other, especially sensitivity to rejection, which is a common thing a lot of autistic people experience. I know everyone experiences that, but it's like extreme. With autism. You're just like, Oh my God. And even like perceived potential rejection, which that makes me anxious, which then makes me depressed. And then the emotional turmoil in turn is exhausting, which makes me more tired, which triggers my nervous system to make the pain was such a fun combination that all kind of goes around and a bit of a merry go round. You just got to take a breath and be like, Don't listen to your brain. You are worthy. You are enough. And it's okay to rest. It's okay to rest. The world will not end because you rest.
Peta [00:15:38] So, Zoe, what do you wish for the future for people with disabilities?
Zoe [00:15:45] Oh, a lot. I hope that we can be genuinely included in things. I hope that we can be shown that it's okay to be proud and it's okay to rest and do whatever you need to to live life best, that your access needs matter and that you're not being a pain by asking for them. I know it's very hard too, because I often feel like I'm not allowed to have my access needs met. Looking after yourself helps you to look after others. You cannot complete your goals if you're just killing yourself and putting your needs lost. You have to put yourself first, even when it sucks and you have to rest even when it's frustrating. I really hope that people can understand different types of disabilities and that invisible disabilities are just as valid, but also including other disabilities that typically aren't included. You know, people with intellectual disabilities, for example, are often really underrepresented. I want to see more disabled people in power. I want to see more disabled people in leadership positions. I want to see more people in business. And I want to see these spaces actively include us. Often I go to events, for example, and you know, they're like, Oh, it's accessible, but it is not like, for example, you can't get your wheelchair in the bathroom or the ramp is like ridiculously sloping and you'd have to be the Hulk to wheel yourself off it. Oh, I went to a ramp. Sorry, I went to a restaurant once where the ramp was this cracked piece of wood that literally broke as I was on it and I couldn't get up by myself. You know, they just don't think of those things. And that's a basic thing, just allowing someone with a chair to get into a location. And there is so much more that needs to be discussed, like sensory issues and people that use alternate forms of communication. People that are blind or, you know, deaf. These things aren't included. And if you if you need those access needs, you usually just left Alec all to bed. Sorry. No problem. But it should be your problem. You should want to include as many people as possible. And it's okay if you don't get it right, but you at least have to try and learn and do better because it's not okay. And there's actually a pretty good chance that, you know, you'll become disabled one day to. People don't realise that it's very easy to become disabled. It's very easy to become chronically ill and have these things impact you forever. Not to mention age. Like if you're lucky enough to age, you probably then have issues where you'd be like, Huh, Those access needs would have been good if I'd fought for them back in the day. I really hope the world understands more of that, as well as stigma and internalised ableism. Like please learn about internalised ableism, especially if you know and love someone that's disabled. Just listen and stop forcing these terrible opinions and views of disability on us and start making us feel bad for using mobility, aids or, you know, looking after ourselves. Just let us live and celebrate us and that we're still valid even if we can't do all the things and achieve everything we want to.
Peta [00:19:03] Thank you, as always, 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 platform you're listening on and give the podcast a follow? So I pop up on your feed automatically every Tuesday. If you'd like to ask me a question for a future episode of the podcast, you can either contact me via Instagram. My handle is at Peter Hook, or you can send me an email. I can't Stand podcast at James Outcome. Thanks again for listening and 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 pioneering people where this podcast was recorded.