“...they just think, oh, if you can't see it, it mustn't be that bad”
Peta Hooke interviews Zoe a journalist, copyright, speaker and author who lives with multiple hidden disabilities. Zoe talks about workplace adjustments, systemic barriers, attitudes and the kind of support hat would really help.
For more information about Autism, please visit our invisible disabilities index.
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
Transcript:
Peta [00:00:00] I would like to acknowledge the traditional custodians of land and waters of which this podcast is recorded, especially to those with a disability themselves. Hello and welcome to Sunflower Conversations, a podcast where we explore the experiences of people with hidden disabilities and what the sunflower means to them. My name is Peta Hooke. I'm your host. I have cerebral palsy as well as other non visible disabilities. Every episode we're going to be chatting with a different sunflower wearer to understand what it's like for them to identify as somebody with a hidden disability and how people can best support them in different circumstances. Let's add a little bit of sunflower sunshine to your day and get started.
Zoe [00:01:04] Hi, I am Zoe Simmons. I'm a disabled journalist, copyright, speaker. I also write books and do live experience work and trying to make a difference however I can. And I live with multiple disabilities, including multiple hidden disabilities, which is fun.
Peta [00:01:21] It is fun. It makes life complicated. But for the purposes of this episode today and the podcast, it means we're going to have a great conversation because I'm sure you have lots to tell me. In fact, I know you do. So first and foremost, Zoe, what do you think people most misunderstand about your disabilities?
Zoe [00:01:43] I mean, I think when it comes to most disabilities that you can't directly see, they just think, oh, if you can't see it, it mustn't be that bad. But I would also disagree that you can't see it, because you can see the reaction when someone is in a lot of pain. You can see the reaction when someone's ridiculously tired and struggling and sick. But a lot of the time there's just so much stigma and ableism. It just gets labelled as, oh, you're just lazy and oh, you're just not trying hard enough or you just need to push through. Or if you just walked more and got more sunshine and they kind of make it like it's our fault rather than us having, you know, medical conditions that we can't control. And, you know, anyone can develop a disability, especially a hidden disability. It's really awful that there's this perception. And whenever people speak up about it, there's so much stigma. I'm like, oh, that's not real. And I have noticed that when I speak out about it, but that just makes me feel like I need to even more, because if that's what's in the public sphere, what's in the private space, you know, and I know lots of people get treated so horribly by the loved ones just because they don't understand and, you know, they don't get access needs met, they don't get support, they just get treated horribly. And I have had some pretty awful things said to me. So I'm really passionate about dispelling this and being like, hey, remember that not everyone has the same capacity, has the same abilities, and we need some differences. We need more rest. And that's okay no matter what condition you have.
Peta [00:03:09] 100%. And I think often people would assume that the misconceptions we face are mainly through strangers who don't know as well. But as you say, that hasn't necessarily been your experience.
Zoe [00:03:26] Not at all. I mean, yes, strangers have had said and done some pretty like, 'ugh' things, but I think the ones that hurt the most come from the people you care about. You know, like I've had people who claim to love me or have claimed to love me and told me that, you know, I am. It's immoral for me to post pictures in my wheelchair because I can walk and I'm not fully paralysed. And people saying things like, oh, it's embarrassing. And oh, you wonder why you have no friends.
Peta [00:03:53] So would you say that the additional barriers that you've faced have been the biggest challenges in and around your disability?
Zoe [00:04:01] I think attitudinal obviously is a huge thing. But I think that also seeps like, you know, attitudes about disability also mean that, you know, when you try and get a job, they won't make reasonable adjustments for you, even though it's legally required that just like, oh, that's not like something basically like work from home if you're able to or flexibility. And those things do really seep into things and create systemic barriers. And we don't really have much power to change it. Trying to but, you know, there's only one physically disabled person in Parliament, as far as I'm aware. Maybe there's more, but at least only one I know of that yells and talks about stuff. So it's like we really need more representation of this so we can smash these attitudes for all disabilities. And, you know, it just it needs to be better because it does create a lot of suffering. And it's already really difficult to live with chronic pain, chronic illnesses, any kind of health condition or disability without all these added barriers. So, you know, their stigma does not dictate our story. So let's smash it.
Peta [00:05:06] That's so well put. Why do you choose to wear the hidden disability sunflower?
Zoe [00:05:12] I have my keys on it, I actually, so it's very handy. So I don't lose my keys and I can just like walk around and I it and I also put my little pins on it like I'm autistic and, you know, LGBTQIa pins, First Nation pins and, free Palestine pins, whatever I can get really the advocates for a topic that I am passionate about. But I also like, I guess, the sense of community. You know, whenever I see someone wearing the lanyard of a bracelet or anything else in public, I'm like, oh, cool. That's cool. So it's kind of nice just to, I guess, recognise within the community. But, I would really like more people to recognise it. I mean, I don't tend to wear it when I'm using my wheelchair because it's an obvious indication that I have a disability. But when I'm using, like, my walking stick, for example, especially if I parked in like a disabled spot. I always get really scared that someone's going to yell at me. Hasn't happened to me yet, but I know lots of people have done that, especially if they see you walk. And they don't understand. There's so many things that impact your ability to walk and how far you can walk in. Whatever. I think it does help, and I really hope the more people become aware of it and become less judgy and know what to do about it. Like, I think it definitely needs to be more awareness and training, but it's happening, so it's good.
Peta [00:06:27] And I think that's testament to not only how important it is to have opportunities like this, this podcast, having your voice heard, and others that have been on the podcast so far to really illustrate how important it is for people to understand that those with hidden disabilities are impacted by other people's actions every day. When you think of a positive interaction that you've had when you wear the hidden disabilities sunflower lanyard how it has that make you feel?
Zoe [00:06:57] I don't know if I've had necessarily any positive experiences, like no one's been like, oh yes, I'll help you. But I guess hopefully some people will get it and see it and understand. And maybe the more people just see it, they'll be like, oh, what's that? Why? Why are a lot of people wearing that? Let me look into it. I like what it represents, and I really want to support organisations that are trying to do better. So, you know, I have like pictures of my parliament with my hidden disability lanyard, I guess, showing things like that in spaces like that with disabilities often not seen is powerful.
Peta [00:07:31] For those people who are listening and maybe don't understand hidden disability to the extent that I would like to. Talking about your personal experience. How would you like people to help you if they see you wearing the hidden disability sunflower?
Zoe [00:07:49] I guess, you know, if I was wearing it and I was walking, maybe like a I don't know holding open a door so my mobility aid can get through. Or if you're at a check out or something in some way that a staff member can help make it easier. Sure. I mean, there's not really seating and check out areas, which I think is not good. There really should be some form of seating. Consider people that can stand. People don't realise how much effort that takes when they've taken it for granted. But even just understanding, being like, okay, this person obviously has something, you know, maybe if you're in a line, get served first because recognising that standing hurts.
Peta [00:08:26] Unlike other people that I've spoken to on this podcast, I'm interested and also sad to hear that you haven't had a positive experience wearing the hidden disability Sunfire lanyard, with other people and the public, which. I'm just really sorry. That's that's awful. If you had an exceptional experience, what would you like that to look like?
Zoe [00:08:51] Honestly, I don't even know. Because, like, I'm often using my wheelchair. You get treated differently and horribly. Anyway, like, I'm sure you've probably had the same things where people come up to you and like, hey, want to race? It's like, I'm not two. So no, that's really infantilizing. Please go away. Oh, like, do you have a license for that thing? If you wouldn't have it. Any other human, any other adult? Don't say it to a disabled person. Like, oh my goodness. Yeah, I think if a good thing was happening, if I was walking and I had my lanyard on. If someone could just, you know, be considerate of that and like, oh, hey, we have a chair here.
Peta [00:09:29] And you also write about the incentivization of disabled people. I really thought we were progressing in this area naively. I was at a function the other week and it hasn't happened to me in such a long time, but somebody patted me on the head. I don't know whether it's because they think we're short, like because we're sitting down. Therefore we equal as being children that it is a totally real thing. You're correct. Where would you like to see the sunflower recognised next?
Zoe [00:10:05] Honestly everywhere but transport, especially because people just ignore me all the time. If you're standing there and you have a lanyard, someone give you a seat. Be really great. If events considered us more, especially like festivals. Yeah, it's really hard. Actually. Medical settings would be great if they also accepted hidden sunflower disabilities. Like, I don't know, going to your doctor and being at the reception and like standing and being in a lot of pain. And I once went to sit down while I was in the middle of that and she was like, I'll come back out here. I was like, I can't, I'm in too much pain. I think we really need to not only have, like the Hidden Sunflower implemented, but working on smashing that disability and that stigma and having better disabled representation and having us, you know, on the TV and in the media, in movies, in Parliament, writing things and actually being a part of it, not just one person, one privileged person, but like an actual diverse array of us.
Peta [00:11:03] And that's another episode for Sunflower Conversations.
Peta [00:11:26] And don't forget you can always connect with the sunflower between episodes either via our website HDsunflower.com/au via our Facebook Hidden disabilities ANZ or via Instagram hidden disabilities_ANZ. Those links will also be in the description. Thank you so much for listening. Until next time, have a lovely sunflower day.