Crip Café: What do disability and mental illness have in common?

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Olivia: Kia ora everyone. Welcome to Crip Café, a fortnightly live podcast where we figure out how to be disabled together in Aotearoa. I'm your host, Olivia.

Ella: I'm Ella.

Olivia: And, yeah, welcome back everyone.

Ella: Yes, kia ora koutou, welcome back. This season of Crip Café is proudly powered by our friends at Permobil. How have you been, Olivia? What's new, what's happening?

Olivia: Well, over the weekend I actually went to Verb Festival in Pôneke, so Verb Readers and Writers Festival, and I got the honour to share the stage with some amazing disabled creatives, Bee Trudgeon, Riah Tahana-Dawson and Jared Flitcroft and we talked about the politics of disabled joy. Which is a really cool and interesting topic because first off, like, how do you define disabled joy and why is it actually political.

And I think, yeah, there was lots of interesting things that came out of it. It was like, I guess we live in a world we navigate systems that are not designed for us to really, like, almost give us the bare minimum sometimes, let alone joy. So us existing as joyful, happy, disabled people is, like, challenging for some people, which I think is kind of interesting.

But yeah, it was great. My wheelchair made it there in one piece, it was really rainy. The roof started leaking halfway through the panel.

Ella: Oh no.

Olivia: Yeah, so there was like a drip, drip. But it was awesome to see lots of cool disabled creatives down there and, yeah, big shout out to Kate and Gav from Verb for hosting us and also Robyn Hunt and Trish Harris who founded Crip the Lit, so the event was in partnership with Crip the Lit.

Ella: Oh, great.

Olivia: Yeah, so I'm still kind of like riding that wave of really enjoying Verb. It was a lot of fun. How about you?

Ella: Very good. How about me? Well, this time in two weeks the D*List and AUDSA will be having the disability debate, which is very exciting. It's two weeks from now, so October, Wednesday 14th, doors open 6 pm and the event starts at 6.30 pm. We're very excited to, yeah, have that one. It's going to be at the Auckland University Grafton campus. You'll find more information on our website. And we have some confirmed candidates, shall I tell you who they are Olivia?

Olivia: Yes please.

Ella: Priyanca Radhakrishnan from Labour, Ricardo Menendez-March from Greens, Orini Kaipara from Te Pati Mâori, Rima Nakhle from National, Keegan Langeveld from NZ First and Cody Marsh from TOP. So yeah, it's going to be a good one.

Olivia: I'm so excited.

Ella: I hope it's a bit spicy.

Olivia: Yeah, we're going to have to throw in some curveballs. If you're in the comments now, we'd love to hear what questions should we ask at our political debate. So please post them in the comments, we might have time to read them soon, otherwise we will note them down to share during the debate. Yeah, I'm excited.

Ella: We're also going to livestream it, I forgot to add. So if you're not in Tâmaki, make sure you get a livestream ticket so you can watch it from home.

Olivia: Yeah, so next week's Crip Café episode will be replaced with our live debate at a slightly later time week after next. Sorry, yeah, the next two weeks.

Ella: Yes, yes, yes.

Olivia: Yeah, so that will be, yeah, it will be cool.

Ella: Yeah, I'm excited, looking forward to it. We've sold lots of tickets already. I think just over three quarters of the tickets have been sold, so make sure you get in there.

Olivia: Yeah. What question are you going to bring up or ask the politicians?

Ella: My gosh. What am I going to ask them? Maybe something like, I don't know if I can - maybe something like do you care about disabled people? No, maybe not.

Olivia: Do your policies actually reflect you caring for our communities?

Ella: Have you actually consulted with the community and, like - yes, maybe, we'll have a good think about that one. What about you? I feel like you'd have some good questions.

Olivia: Is it naughty to be, like, if you could be disabled, what disability would you have? Sorry, that's probably not right.

Ella: What disa - no, we can't ask that, Olivia, goodness me.

Olivia: We could throw in some cheeky curveballs like what is article 17 of the UNCRPD?

Ella: I don't know what that is.

Olivia: I don't know either, but we could ask them that. So if any of the panelists are watching now, I guess they could research that. Anyway.

Ella: If they're avid Crip Café fans.

Olivia: Yeah. I guess talking about the elections, some of our friends at All is For All, so partnering with the Electoral Commission, so they're working together to share some accessibility information in the lead-up to the general election. So the sessions will cover things like how to enrol, accessible ways to vote, what support is available, any questions you might have.

Yeah, so I think it's really good that there's more resources and information out there to get involved in voting. So there are two more Zoom sessions on 15 and 20 October and the sessions are designed for Deaf and disabled, carers, whānau and community. So you can contact electioninfosessions@allisforall.com for more information. So it's great that there's going to be more information out there.

Ella: That's the thing, we all need to get voting don't we so we can actually, yeah, have a say.

Olivia: Yes, yes. So as you would see, the theme of this episode is disability and mental illness. And kind of talking about the distinction between, like, mental health, which all of us can experience, and mental illness, which are more diagnosed conditions, lifelong diagnosed conditions, and I guess what our communities can all learn from each other.

So mental health awareness week is actually in a couple of weeks from 12 to 18 October, but we're talking about it a bit earlier since our election debate is that week. This year's theme is Belonging Matters, which I think is really cool, we all want to belong. Why does it matter to you? You know, where do you find belonging, Ella?

Ella: That's a good question, I think belonging to me, when I think of belonging, I think of identity. So I think, like, when I am proud of my identity, or when I'm around people that share probably the similar identities, I think that's where I feel belonging. So whether that's, you know, my disabled identity at a short statured event, or my Rainbow identity at a queer event, or my Mâori identity, or yeah, just, like, finding joy within those communities, I think that's where I feel belonging. Also self belonging, that's a thing eh?

Olivia: Yeah, like being okay with who you are you mean?

Ella: Mmm, and actually being quite content just hanging out by yourself if you don't, like, have a large community of people, I think kind of like finding that belonging just, like, being happy with who you are and what you're up to. Yeah, being kind of content in that space. Yeah, that's where I think I find belonging.

Olivia: Oh, nice. I was reflecting on this as well, how at Verb Festival one of the amazing things about often when a bunch of people with mobility aids or wheelchairs are sat in a theatre, they're all in the same area. But what was really cool about Verb was that all the people with disabilities were, like, literally on the front row.

Ella: Nice. So they should be.

Olivia: Yeah, exactly. And it was so cool because, like, I feel like there was such a sense of camaraderie and belonging there, because everything was so accessible and like, you know, all the disabled community were sitting right at the front row. So I felt so, like, yeah, things that we were talking about on stage could resonate with the people, to me personally were most important, you know?

Ella: Yeah, yeah.

Olivia: So it was really cool that when there are spaces designed like that, you just feel belonging.

Ella: Even though there's probably quite a range of disabilities.

Olivia: Yes.

Ella: You just kind of get it, eh?

Olivia: Yeah, yeah.

Ella: Like that, yeah.

Olivia: Cool. Well, our next segment is non-disabled nonsense of the week.

Ella: Yes.

Olivia: Yes, so for this week my non-disabled nonsense --

Ella: What's your story, Olivia?

Olivia: -- of the week, I call it the chair lady story, which I have told some people already. But my fiancee and I went to an auction a few weeks ago and we showed up at the auction house and there was a massive staircase to go upstairs and they had no lift. So the agents were all, like, fussing over us and were like, "Oh we can help you carry up the lift(sic)", or "You can watch it on the livestream downstairs", and I was like no, I want to go upstairs and watch it and be amongst the action.

Ella: By yourself, watch it downstairs by yourself?

Olivia: Yeah, or me and Gareth to watch it downstairs.

Ella: Rude.

Olivia: So Gareth was like "No, I'll just carry you up." So he left my wheelchair downstairs initially and, like, scooped me up, carried me up the stairs. And it was so crowded, I was like, oh my gosh, embarrassing, it was like, "Move out of the way please."

Ella: Embarrassing, but step aside I'm here.

Olivia: The queen has arrived. And all these people are probably like why is this girl being carried around. Anyway, so then Gareth had kind of prepared a chair for me to sit on. So he plopped me down in this chair and there was this couple in front and they were like "Oh, I think this is reserved for the chair lady", and I was like "I am the chair lady". And so he sat me down and we didn't end up bidding at the auction, but the agent was like "Oh, are you going to bid?" And we're like "No, we're all good", he was like "Oh okay", because he helped with the wheelchair and everything, he was like after all that. Anyway, so we didn't bid and we, like, went to leave but then as we left no one offered help downstairs.

Ella: Because you didn't buy the house.

Olivia: I don't know, they were probably just too busy, but that was annoying.

Ella: Rude. All the accommodations come up, and then as soon as you're not spending money...

Olivia: On to the next one. But the funniest thing was, when I got downstairs I noticed there was this big, like, quote written on the wall, and it said "Can we do better?" And I was like yes, you can, you could, you could have a lift. Anyway, that was my non-disabled nonsense story. It was like something from a sitcom, it was so funny just, like, "Are you the chair" - "I'm the chair lady". And just the embarrassment, anyway.

Ella: That's for the chair lady.

Olivia: Classic non-disabled nonsense moment. How about you?

Ella: My story probably isn't as exciting, but I did think it was funny. I was at the supermarket the other day and you know when - so obviously you've got self check-out, do you do self check-out?

Olivia: Yeah.

Ella: I don't know do self-check out. I don't like it. All the things are up high so I'm trying to, like --

Olivia: Yeah, it is a bit awkward.

Ella: It's a bit awkward for me. So I always go in the aisles, no, cashiers.

Olivia: Yeah.

Ella: That's what you call them? Yeah. And I was like in there with my little trolley. And then I could hear, like, a mum saying "Let's go there, there's not many people in that row." And she came around and then she saw me in the row and she was like oh, because she didn't see me from the other one, so she thought --

Olivia: Right, yeah, it looked empty.

Ella: It looked empty from her perspective. So her and her child came in, they're like "Oh, someone's here" and then they left and they went to another one. But I thought that was kind of funny, because I was like ha ha, I'm here. So it's not as exciting, but I did find it quite interesting that, like, I didn't realise people couldn't see me from the rows over.

Olivia: Yeah, yeah, I know. I guess seeing things from different perspectives, yeah.

Ella: Yeah, but also, yeah, self check-outs, not a huge fan. But I can understand for some people they might be nice because you don't have to, like, converse with people, or you just do your own thing, right?

Olivia: Yeah, yes, yeah. I mean if there's a queue for a longer check-out, then you probably don't want to do that one maybe. I don't know. I seem to use them, but, yeah, sometimes it is awkward, like, leaning, I can't stand and reach, and it's awkward to, like, lean over.

Ella: I think so, I think it's a bit tricky. That's my story.

Olivia: Yay.

Ella: Chair lady, that is my story.

Olivia: Thank you supermarket lady, no, I don't know. Anyway, so we mentioned earlier the theme of this episode is looking at what do disability and mental illness have in common. So I mean I speak for myself, but I'm not an expert on this topic, but today we have two people who are and have kind of like work experience and lived experience themselves.

So what we're going to do now, we're actually going to play a pre-recorded interview, or an excerpt from a pre-recorded interview I did with the amazing Alexia Black and Kahurangi Fergusson-Tibble. And, yeah, we had a really cool kōrero about this topic and I guess what our communities can learn from each other, which I thought was really cool. So yeah, we're going to play that clip now and the full episode, or the full interview of that is already on YouTube, so you can watch the full extended version there. But we're going to play that now.

(Video played).

Olivia: Thanks for joining us on Crip Café. Today we're talking about the connections between disability and mental illness. So yeah, thanks so much for sharing your insights and knowledge. First off, can you quickly introduce yourself. So do you want to start, Kahurangi?

Kahurangi: Yeah, tênâ koe, tênâ kôrua, tênâ tâtou katoa. Yeah, Ko Kahurangi Fergusson Tibble tōku ingoa. He uri ahau nō Ngāti Porou, Te Aitanga a Māhaki me ngā tū Uenukukôpako. He tangata kāpō ahau. He kaimahi ahau i roto i te mahi o te hinengaro me te waipiro me rā te mea he kino. Nō reira, e mihi atu i tēnei rangi.

So my name is Kahurangi Fergusson-Tibble. I hail from the East Cape, Gisborne and Rotorua. I'm fortunate to live in Rotorua, that's where I'm tuning in from today. I'm a person with a visual impairment, retinitis pigmentosa, yeah, and it's great to be with you both here today.

Olivia: And Alexia.

Alexia: I was like do I just jump in? Kia ora. Ko Manaia te maunga, ko Waipū te awa, ko Spray tōku waka, ko McKenzie tōku iwi, ko Davison tōku hapū, ko Kōtirana, ko Aerana, ko Ingarangi te whakapaparanga mai. Engari, te Kirikiriroa ahau e noho ana. He tiamana au i Balance Aotearoa. Ko Alexia Black tōku ingoa. Tēnā tātou katoa.

I'm Alexia and I am coming from Kirikiriroa today in Hamilton and it's really great to be here to talk about this awesome topic that I feel like I spend so much of my time talking about. I'm the National Chairperson for Balance Aotearoa. We're a national peer-led mental health and addiction DPO, Disabled Persons Organisation.

Olivia: Cool, thank you so much. I just want to acknowledge both of you, but Alexia, you're the reason why we kind of started this idea to have this podcast kōrero. So, yeah, really appreciate I guess your bravery to be like let's talk about this, which is awesome. What do you think the mental health community and disabled communities, what can they learn from each other?

Kahurangi: I think, like so the first thing is it's not what we can learn from each other, it's what others can learn from us as a collective, is the first thought that I have. We have so, you know, all of these communities have something to offer to the world, you know, and be it, you know, yeah, be it some, again, a little bit of empathy goes a whole - a long, long way. And, you know, the things that I see when we truly engage with each other, all of our communities engage with each other, at community events.

You know, I don't - when I go to events that are inclusive of these communities, all I see is just people wanting to be around each other, wanting to share experience with each other and wanting to, you know, and are really interested in the tech, "Oh, how does your iPad do that?" You know, all these little tricks of the trade, you know, there's a whole bunch of creative people in our spaces that are working out all sorts of fandangled ways to do things. And I just think how amazing is that.

You know, because within the space we've had to be creative with a whole lot of nothing. You know, so when you've got a whole lot of nothing and we're wanting to, you know, we want to create a world for ourselves that we can thrive in, man, we come up with some brilliant ideas. And I think for myself our communities, our collective communities have some of the answers to solve some of the biggest problems in the world, you know, the opportunity for us to have a tutu with some of these tools that are out there, or have deep meaningful conversations with the leaders of this world is the thing that I think we have to offer the world in general.

Is there things that we can learn from each other? Yeah, yeah, I do think there's heaps. I think that that list is exhaustive, because what these communities were interacting with 20 years ago is who would have foreseen, well, you know, if you're a sci-fi reader like me, we've been forcing AI for a number of years, nigh on decades, you know, sci-fi writers have been talking about this for a long time.

But, you know, the thing is, yeah, like, the tools that we were using 20 years ago are completely different from the tools that we're using now. So some of those experiences are different, or some of the ways that we engage with the world are different. But at the same time, you know, I want to quote one of my real good friends, her name is Dr Pikihua Pomare, she's a psychologist out of Massey University.

Anyway, she goes "Kahurangi, you can't fake whanaungatanga." And what she meant by that is really true, deep connection with people is a pathway towards engaging with people and trying to find out what we need. And I think to myself when I've engaged with our communities, we've got some of the most curious and creative people. And there isn't a time when I've been amongst our communities where, like, I'm just inspired, I'm fully engaged with people, it's because our people want to engage with the world. Our people have this deep desire to be part of this world. And I think, yeah, I know this is a big rant, but I just think, wow, it's amazing, and I get energised whenever I'm in a room of our people, yeah. Anyway, that's me.

Olivia: Kia ora Kahurangi.

Alexia: It's hard to follow that, but I, in terms of what we can learn from each other, I just think we've been siloed off and, you know, for a long time we had a shared history, you know, they institutionalised us all, they plonked us all together. And we've gone our separate ways now, which is great, and I don't want to, you know, say that we all need to stick together all the time, you know, all go ten pin bowling together or anything like that, but --

Kahurangi: Oh...

Alexia: You can, I don't like it, but the thing is we're stronger together when we're doing our advocacy. And we're all at different stages in our kind of lived experience-led advocacy journeys and we can learn from what each of us has done along the way, what works, what doesn't work. And, you know, if we're all together, we're like a quarter of the population, we're not a small amount of people. We've got a lot of strengths, you know, especially talking in an election year.

And so I just think if we were all working together and using things like the CRPD to push home those battles that we're trying to fight for everyday to improve conditions for our whânau, I just think that we'd be a lot stronger off, yeah. There's more about us that's similar than different, and I just think that intersectionality is a beautiful part of the world and siloing off into little distinct groups all the time doesn't serve us well.

Olivia: Oh, that's a lovely way to end. Thank you both so much. We really appreciate, yeah, just being so vulnerable and sharing all your knowledge in these sectors and your also personal stories as well. Yeah, we really appreciate your time and, yeah, all the best with being busy in these communities and hopefully we see more conversations like this and collaboration in the future.

Alexia: Thanks. Love the D*List.

Olivia: Kia ora and thank you Alexia and Kahurangi for their awesome kōrero .

Ella: Yes, and you can watch it don't forget the full version on YouTube, on the D*List YouTube. We'll now go over to our disability dilemma section. So like Agony Aunt where people can write in their questions, like a bit of a broader dilemma that they might be facing. Remember if you've got questions, do send them into us so your question might be picked next time.

Okay, first question. "Sometimes as I'm crossing the road in my wheelchair people will grab my handle bars and push me without asking, thinking it's helpful. But it's not. How do I help them understand that it's not okay?"

Olivia: Me, I'm the wheelchair user here.

Ella: Well, I mean, you know, I'm putting you on the spot, but, yeah, what do you reckon?

Olivia: Yeah, well that has happened a few times where people want to automatically help me, or assume that I need help. I think it's kind of annoying for things, like, yeah, crossing the road, because often, like, there's so much, like, going through my head when I'm crossing a road, especially, like, my little caster wheels on the front of my chair, like making sure that the lip is the right size for my wheelie and all that kind of stuff. And I think like for the most part people do mean well, so having a bit of, like, understanding and not getting too angry or bitter straight away and, like, "stuff off" vibes.

Ella: So they've actually pushed you without asking, they've just started?

Olivia: Yeah, I think it's happened a small number of times, people are like "Oh let me help", and they want to push. And often I'll stop and put my brakes on, first of all like a safety thing.

Ella: Yeah, yeah.

Olivia: And then I'll be, like, "Hey, actually I really appreciate it, but I'm all good, I know the skills to push my own wheelchair." So I usually just like being, like, clear and direct. And usually people kind of understand and move along, and that's all good.

I mean on a side note, such an embarrassing story, this actually did happen to me once. But I was pushing myself up a steep hill and a person asked if I needed help, and I was "Oh yeah, actually, it would be quite helpful." But they were so over-enthusiastic about helping me, they pushed me really fast across the road and my caster wheel got caught on the little lip crossing the road and I, like, face planted out of my wheelchair on to the road. It was so embarrassing, it was probably one of the most embarrassing moments of my life.

Ella: What did they do?

Olivia: And a crowd of people went through, and she was mortified.

Ella: Yeah, as she should be.

Olivia: Tipped out this girl in a wheelchair, and I - yeah, so I guess that's an example of what can happen when helping someone in a wheelchair goes wrong. But, yeah, so I think just being firm, like, making sure that you feel safe first and then, yeah.

We have a comment from a Gareth Whittington. "Did you just assume my needs?" Yes, you could say that is a response.

Ella: You could. I think people mainly mean well. However, I think, yeah, definitely ask, like, yeah, and I think also, do you think if someone asks and then someone's like "No thanks", all that other person needs to do is be like "Okay" and then carry on, not like "Oh, well, I was just asking, like you looked like you were" - you know, so I think sometimes people go on a bit about it, don't they.

Olivia: Yeah, yeah. I mean I feel like more recently it has changed a bit, people don't assume and force their help on me. But people have also started framing, like, "Hey I'm sure you're all good, but I just wanted to check if you need help." I really like that framing, because its, like, "Hey I'm here if you need be, but you look pretty capable."

Ella: Yeah, you look like you're on it.

Olivia: Yeah.

Ella: But just in case. That's actually, yeah, that's a good way to do it.

Olivia: Yeah, yeah. Okay, we have another dilemma, which says "When I meet people for the first time they sometimes share their own injury story in an effort to relate, but I never know how to receive it. Encouraging, congratulatory, pity, what do I do?"

Ella: I guess that could be used in lots of different contexts, couldn't it.

Olivia: Yeah.

Ella: Like the first question, sometimes people are trying - they're well intended or, you know, their intentions are okay, but I think sometimes you kind of have to ask do I need to do that, like, do I need to find a story of when I've had a sore leg, or when I've done this or that to connect with that person, right? Maybe they could find something else to connect over.

Olivia: I guess when you've got such a visual disability, like you and I, people maybe feel awkward, or they feel like that's the first thing they can do to, like, like you said, connect on a relational level.

Ella: Yeah. But why do they feel awkward?

Olivia: I don't know, I mean as humans we want to connect, right? And maybe that seems like the first obvious thing --

Ella: Yeah.

Olivia: -- to connect with. Whereas for someone else it could be something like your tattoos, or your taonga --

Ella: Yeah.

Olivia: -- or something like that. There are so many other interesting things people could connect with.

Ella: I've had people, like, if you're watching and you've done this to me, please, you know - no, I've had people go like "Oh I'm short too, I find it so hard to find clothes." I'm like excuse me, like, it is not the same. Like, you know, yes, sure, you can find some shorter things, but I have to get mine altered, you know, or, like, "You must get all the good shoes", and I think people are, you know, well intended, but just think about it first.

Olivia: Yeah, I think in terms of, like, how do you receive it, try not take things too personally.

Ella: Yeah.

Olivia: I think similar to the other dilemma, you know, that for the most part people do mean well and probably just haven't been in the disabled - had the joy to be in disabled communities like we do. So don't kind of have that full understanding.

Ella: Maybe you can if you know the person, or it's like someone that can take a bit of a joke, maybe you can, be like "Well, it's not the same is it, ha ha ha" and then carry on or something maybe, if you're feeling like it fits. But, yeah.

Olivia: Yeah, good luck with those dilemmas people.

Ella: Keep sending them in, I'm sure there's heaps out there.

Olivia: Yeah. Well, that brings us to the end of Crip Café this week, yeah.

Ella: Wow.

Olivia: All wrapped up all nicely. Thank you so much to everyone who has joined us live, or is watching later on. Thank you also to Alexia and Kahurangi as well for being in this episode.

Ella: And we'll see you next time.

Olivia: Yeah, our election debate is in two weeks.

Ella: Don't forget to get your tickets.

Olivia: Yes, come in person or join online. We'll, yeah, see you there. And one last final thank you to our sponsor the rest of this season of Crip Café is proudly powered by Permobil. We'll see you later, bye.

Ella: Ka kite.