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Nina Tame: Please Don't Touch My Wheelchair

Nina Tame is a must-follow for anyone who loves Instagram. Her no-filter, true to life representation of living with a disability is refreshing, real and she loves a good swear word.

Join Peta for this fantastic conversation about ableism, body image, motherhood and who has Nina's permission to touch her wheelchair.


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Instagram: @petahooke




 

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. My name is Peter. I'm your host and I have cerebral palsy. This week I have the amazing Nina Tame. I have no doubt many of you know who Nina is. But she's a powerhouse over on Instagram, sharing her life and what it's like for her having spinal bifida. I loved this chat with Nina, and I hope you do, too. So without any further ado, let's get into it.


Nina [00:00:48] Hi. Thank you so much for having me. And I am Nina Tame.


Peta [00:00:52] Nina, I have to say, your Instagram account was the first Instagram account that I felt really seen in. You so beautifully say what many of us are thinking. How do you think you do get into so many people's heads? I mean, so many people relate to your content. I love the Memes that you create, particularly the one where it says, I'm sorry that you're disabled and you say I'm disabled, not dead. Susan And it's just I love that sort of dry humour. So talk to me about that.


Nina [00:01:30] For a long time, But most of my life really, I had no clue about ableism. I didn't refer to myself as disabled. I just it was just something very much like I was aware that I was disabled, obviously, but it wasn't something I identified with. It was something I just very much shied away from. So I'd use mobility aids a lot As a teenager in and out of hospital. We use crutches, a wheelchair and everything else. And then for a long time in my twenties, it kind of just sat down and I could pass. If you didn't know me intimately, I could pass as non-disabled. And then when my mobility began to decline and I started using a walking stick, as I'm sure most people will relate to, I would still face questions like, Oh, you know, what's wrong with you? What's happened to you? Why do you walk like that, all of this stuff. But at that time I just sort of thought. Well, I'll just answer them. I thought that that was the polite thing to do. I didn't even question What they were asking me was rude or anything else. So just, you know, just would tell them literally my whole medical history and then they'd just be like, Oh, okay. And then they would just leave. And I was always left with this really, like, icky kind of feeling. But again, I just sort of internalised that because they'd just be nice. I've got four children and one of them's got exactly the same disability as me. And when he started school, he wore a leg brace. and he would come home so fed up about people constantly saying to him, You know, What's that? What's wrong with your leg? Like, why do you wear that? And it was kind of like a few things to me happened at once. I was dealing with that with him because it's one thing how I feel, but if my baby is not happy, then, you know, I never said to him oh their just being polite. It was always like, Actually, no, you don't have to answer that if it makes you uncomfortable. But around this time, I'd also kind of stumbled on the online sort of community of disabled people. I think like I clicked on a hashtag like Babe with a mobility aid or something. And I remember just being like, Oh, wow, I've been hiding my walking stick in pictures for two years, and here's all these people just rocking it and just looking amazing and being confident. And then somebody was like, Have you heard of the social model of disability? And I was like, No, what's that? And then I read that and I was like, Oh my God, yeah, it's not me. I'm not the problem. One of the very first posts I put up was about and I really like tentatively put it up and I was so nervous. And I wrote this post about how I didn't like being asked these questions about what was wrong with me. And I expected a lot of pushback like I would sometimes receive in my personal life with people saying, Oh yeah, you know, yeah, that just being nice. And I didn't get that. I had loads of other disabled people being like, Yeah, I hate that too. And it just changed everything. And I found myself having to go back through my entire life with like a different sort of lens on with, like examining all this stuff and going, Wow, all these times that you so you were the problem and you tried to make yourself small and all of this stuff and you wasn't the problem at all. And it's, you know, and I'm still on that journey. I'm still undoing all that internalised ableism. And I would imagine I always will be. We can be sort of the only disabled person we know when we're growing up. So it's really easy then to internalise it because you know, everybody else around you is one thing and you are another. So you just kind of like, Oh, I must be the problem then. So it was just yeah, it was. It's, I mean, it continues to be just such a, you know, a life changing moment for me and how I view the world, how I view myself.


Peta [00:05:06] There's still some internalised ableism that I'm dealing with, particularly around me feeling like I'm in the way a lot. Like I know I have a right to be places. I'm very confident in myself, but for some reason, like put me in a shop with heaps of things in it that's really tight and really narrow and I'll just constantly apologise and feel like I should wait out the front.


Nina [00:05:36] Yeah, I find that as well, though I still, you know, for all how gobby I am online, I'm great at doing that from the safety of my kitchen, but I still have moments when I'm out and about and I find myself recently, I will say sorry. But then as I got past that, I actually no I'm not and just keep going. It's like, you know, I was always taught that. You're kind of first, though, is the one that's been so conditioned into you and it's like the second thought that counts. Although my automatic reaction is still to be apologetic, I always have that second thought going no, you don't need to do that.


Peta [00:06:11] I would love to hear what you say now. When people ask you what happened to you or why you're in a wheelchair, because even though I've been in a wheelchair, you know, since I was five, I still really don't know how to answer that question and not make it awkward.


Nina [00:06:30] You would think that I would say to you right now, but I tend to fuck off. But I was actually out in London a couple of days ago and I was feeling a bit nervous and I was queuing for a cashpoint and I was just I was all anxious. It was really busy. And then this really nice guy started chatting to me and I was like, chatting away and it was all fine. And then he was like, Oh, do you mind me asking why you use the wheelchair? I just lost my words and I just kind of said, Oh, it's just born disabled. And, you know, it's just progressed as opposed to what I normally would like to say is, Hey, come on. That's a little bit of a cheeky question. And I talk about my medical stuff with people and I always sort of say it's people just like, go easy on yourself when that sort of stuff happens. It happens me yesterday as well. With me, I make so much content around people not pushing me in my chair without my consent and the fact I haven't got push handles on my chair for that reason. And again, I was really nervous getting on a train for the first time and the station guy saw me coming up this big ramp and it was fine. It was giving me a good workout. But then he just stepped behind me, started pushing me and was like, Mind your arms, and just was like, So it was only, you know, literally 10 seconds maybe that he took me. But I was still like, oh, and it just and even now I still feel a bit, you know, a bit like gross about it because I wish of being able to turn around and say, Hey, please don't do that. But this was the man that was responsible for getting me on the train. He was going to be the man that was getting me the ramp. And so that it's also like this, you know, you're vulnerable, aren't you? And so often when you're out, you know, you do rely on other people. And then it's it's really hard like how do I maintain my autonomy and everything else, you know, not piss you off so much, you know, let me on this train. For me, the only person who tends to push my chair is Jace or my best friend. That's it. My best friend tends to do it when her legs are a bit tired and she just wants to lean on me for a bit, which is lovely in itself because she's got a disability. It just feels like a nice thing. And me and Jace, it's a really intimate thing, you know. He also touched me on my ribs as he's pushing, Don't give me a kiss. And I love Jace pushing me in my chair. No different to how enjoying touch me in any sort of way. So when it is a stranger, even though they're not physically touching my skin, it still feels like they are touching me. And it is, you know, it's a [yucky feeling]. It's a thing


Peta [00:08:58] It's sort of a double edged sword because. In one way. It's awful. Of course it is. But it's also giving you content for your job. So you must feel like you're never going to run out of content any time soon by the rate of all this. Nina.


Nina [00:09:16] No, there is that. That's why that's the one thing I'll tell myself where I'm just like when someone said something or something's happened. I'm like, Yeah it will make it content, though, I suppose, you know, because it isn't going to stop. Certainly not in in my lifetime.


Peta [00:09:34] I know in the past you were a counsellor. So when people do message you and slide to your DMS, needing support and advice, do you find having that background quite helpful?


Nina [00:09:47] Yeah, it's been lovely in one way or another. I've kind of done that sort of work for like 15 years or so. You know, it was originally like before I started losing my mobility, I was a counsellor and I had a private practice and then when my mobility started to decline, I ended up working in an adult college setting and supporting people with their mental health. And I got kind of disillusioned by the whole idea of therapy for a while because for me, when I did my training and stuff, we didn't even talk about any marginalised group. And I still feel like mainstream therapy is very much for white, straight, non-disabled sis, generally middle class because it's so fucking expensive. I remember when I was looking for my own therapy a couple of years ago, and I sent out all these emails and basically before, you know, I asked them do you know what ableism is? and most of them were like, No. It's something I'd like to do eventually. There's lots of things I'd like to do eventually and I never get around doing them, but I'd love to sort of just offer training to therapists to say, you know, when you are working with different disabilities, kind of talking about it because. You know, especially I think from my friends with with chronic illnesses as well. Like sometimes I you know, I'll have people come to me and they will just tell me the most horrific experiences that they've had with, you know, proper therapy, so to speak, and the way they've been invalidated or not believed. So for a while I was like, Oh, I just don't like this at all. And then I just found myself sort of still doing the work with like, say, people coming into my inbox. And then that's all branched out where I started to do mentoring work with disabled people. So being able to kind of apply the tools like the therapeutic tools that I think are really useful, but also with the knowledge of actually, you know, when you are anxious as a disabled person, that anxiety isn't irrational. You know, if somebody was to go to therapy, and be like every time every time I walk in a room, I think everybody's going to hate me. They'd be like, Well, that's totally irrational. Let's change that thought pattern. as a disabled person, it's not actually irrational because chances are, if you're going into a room full of non-disabled people, somebody is going to say something to you. So I think being able to bring that understanding of disability as well as using my counselling skills has been really sort of, yeah, it's been lovely. It's one of my favourite aspects of my work.


Peta [00:12:22] As you said, one of your children does have spinal bifida. So I'd love to hear about how you approach parenting in relation to making sure ableism and internalised idealism doesn't happen in all, you know, not just your disabled child, but for all your kids to understand. How do you approach that as a parent?


Nina [00:12:45] I mean, we spoke to my kid who's disabled. We spoke to him about it from such a young age and explained what ableism was because I didn't want him to internalise it. You know, if somebody says something to you, I want you to know that that is not true. I still remember the first time I've got a big lump on my back with my spine bifida, and I still remember the first time. It must have only been about four where another kid saw it and was like, eww and I just accepted that. And then that became fact in my head, just put that way. Oh, that part of me is disgusting. Nobody likes that I'll keep that hidden. And I was like, I do not want that for him. So you know, we spoke about it from a young age. And, you know, I've got two older teens as well. And we will have conversations around it because naturally more than language can sometimes. And I'm like, let's not say that, you know, just kind of common words that teenagers and a lot of people say. So we sort of had those conversations with them. I think I've developed kind of the wheelchair stare in which when I'm out and about, I'm not really aware of the people around me because I'm just kind of like focussed. This is what I'm doing, this is where I'm going. But when I'm out with them, my 15 year old would be like, Did you see them? Why does she look at you like that? Why are they still, you know, and they just see it and I hate it that they see it. But it's also, you know, I'm very confident that. You know, they would never make a disabled person feel uncomfortable. There was one a couple of years ago where we were out for London for the day, and my youngest at the time was must have been about three or four. We'd gone up this really big hill and it was such hard work. I was so looking forward to when we got to come back and I got to go back down the hill and I was like this is going to be worth it. He was sat on my lap and it was just lovely and we were giggling and I could see these two people in front of me at the bottom. One said to the other, Oh, mind she doesn't run you over. And I just thought oh fuck off! I'm just having a really nice time with my baby and you're just ruining it. For the most part, the challenges are other people. And it's so frustrating because it's like this doesn't, you know, nothing I can do about my legs and not coming back to life. But this doesn't need to happen. I don't need you to be making jokes at me like this. Could be I should be able to leave my house and not have people constantly making comments or silly little jokes or whatever it is, because it's, you know, that is something that people could stop doing, but they don't.


Peta [00:15:25] I saw a beautiful image on your Instagram, Nina, of you showing your back in your underwear. And I know that was a really big step for you, and that was reflected in the caption, but I'd love to hear how you're going with body Image now. What is it like for you today?


Nina [00:15:45] When I kind of started using a wheelchair, it was suddenly like. I wasn't considered in any way, like as in being attractive or whatever else. It wouldn't. It's like you're not part of that conversation. You're not part of that beauty standards conversation. And at first I was a bit like, Oh, this is weird. I'm kind of like, really visible, but at the same time I'm really invisible. I'm certainly not going to get catcalled again. And then I was like, I'm certainly not going to get catcalls again. Okay. You know, I grew up in the nineties. Very you know, I grew up with, you know, mum and sister, older sister. Often we're talking about weight and diets and and I'd always been naturally a teeny little stick of a person and that she gained some weight through my pregnancies and then I was always trying to get rid of it again. And then when I started using the wheelchair, I gained a lot of weight. But it was kind of like this, just this realisation of it's all bollocks. I could be as slim as anything. I could be rolling down the road just wearing nipple tassels. And people still wouldn't really take any notice of me. I could be, you know, the absolute fittest. Body in the whole world. And I still wouldn't be deemed attractive because of my chair. And then it was like, Well, this is actually really freeing. I'm really great because it kind of just really enabled me to realise that all of it, this idea, you know, and that's very much ableism, that one body is better than another body, that one body is more worthy than another body is just a load of shit. You know, bodies are supposed to change and my body isn't any less worthy now that my boobs are more down by my bellybutton than they were when they were, you know, sweet, perky little things. It's, you know, it's changing. It's fine. And I think my son as well really helps with that, because I had always had a real issue with my back and my scars. And when he came along, it was the most beautiful thing I'd ever seen. So it's like, well, okay, they can't be gross on me and beautiful on him. And I also never, ever, ever wanted him to hear me ever say a negative thing about my disabled body, ever, because then I might as well be saying it to him. And that was like my biggest yeah no fuck that.


Peta [00:18:05] I want to thank you from a personal perspective of the way that you illustrate and educate people and show disabled people that it is okay to not be extraordinary. You know, I am guilty of it. On this podcast, I often have guests on here and they're amazing and they've done so many amazing things, or they're Paralympians or whatever. And I think I often think to myself, God, what am I doing with my life? Like, I'm just a girl with a podcast, you know? But I really hope there is a day that one day we can just be normal or here's a better word, boring. I just want the right to be boring, just like everyone else.


Nina [00:18:51] I think it's you know, a running joke that the only acceptable way to be disabled is to be Paralympian. I love Paralympians and I'm always endlessly impressed with anybody who can do exercise and sports because yeah I can't. But it's true. You know, I think it frustrates me because generally in the media and the outside world from non-disabled people, we are viewed as either, you know, inspirational heroes or sad, tragic cases. And we are definitely always seen as being good and pure and nice. And I know some absolute arsehole disabled people that can't stand. You know, I guess some people messaging me saying I feel so bad that I'm not talking about my disability. and I'm like We don't need to, you know, do your thing that you're happy with. You don't have to do it. You don't have to be a professional, disabled person. Just having a disabled person who is just living their life on Instagram and not talking about disability is amazing representation in itself of challenging people's ideas about it. And well, I also, you know, I get that I compare myself all the time. You know, I'll see somebody who's done a book and I haven't written a book or I haven't got a podcast, I haven't done that. And so does that mean I'm not being successful? And and I have to also stop sometimes and check in with myself to make sure that I'm sort of pushing myself for the right reasons, like, do I want this for me or am I trying to do this Because somehow I think it's going to make me like the non-disabled are going to like me. When you grow up disabled as well and go through secondary school. And being a teenager like the stuff is horrific and has definitely led to me having, you know, with a need to be liked and a need to be accepted. So I have to kind of check in with that part of myself and remind her that the only person she needs to be liked by is myself, and that, you know, my I kind of anchor myself in with my little family unit and I'm loved by my children and I'm loved by Jason. So for me, it's all about like my dream bungalow. That's my thing, is to get to the point where I've earned enough that we can move out of here and get my dream bungalow. And I would just be happy pottering around in the garden. Give me a little rescue cats and just, you know, doing some mentoring work throughout the day with other disabled people. That would be enough for me. That sounds like a lovely life.


Peta [00:21:19] What do you wish nondisabled people would better understand about what it's actually like to live with a disability?


Nina [00:21:27] Most non-disabled people view disability through the medical, so they think, Well, your body's the problem, your mind's the problem. And I wish they understood the the how bad the societal barriers and access barriers and attitudes, because that's the stuff that can be fixed. And I find it so frustrating. So I think I find the pity so frustrating because it's like, look, you're pitying me because you've just gone. You can't walk. Isn't that sad when actually my wheelchair fixes the fact that I can't walk? And I wish that you actually saw that. My challenge is in this moment is that that place hasn't got a ramp or that place hadn't got an accessible toilet. And actually you stranger on the street could help to fix that. Because that was such a like light bulb moment for me. Like, Oh yeah, my legs on the problem. The lack of a ramp is a problem. And I've had other sort of non-disabled people have that say, Oh wow, yeah, I never saw it like that. And I wish that more people thought about that.


Peta [00:22:35] Thank you for listening to this week's episode with Nina. I hope you enjoyed it if you did. Can I encourage you to leave a writing review on wherever you listen to your podcasts? It'll help more people find the podcast. If you ever want to get in contact with me. You can send me an email. My email address is I can't stand podcast at gmail.com. Or you can follow me over on Instagram. My handle is at Peta Hooke. Spelt P, ETAHOOKE. Thanks for listening, guys. And until next week. Have a good one. Bye. I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures, but especially to the Bunurong people where this podcast was recorded.


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