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In this podcast you will experience Claire and I talking, and extracts from Cristina Gangemi of The Kairos Forum. She talks about mistaking healing and cure, and celebrating all bodies.

#healnotcure #disabledelegance #askme #criptime

Crutches, Cups and Elegance

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[Violin plays]

[Interview clip]

Cristina: When you celebrate the gift of the body, it doesn’t matter what shape the body is or it doesn’t matter how the body thinks. It’s a gift.

Jak: Welcome to the Guide Gods Digital Collection, I’m Jak Soroka in conversation with Claire Cunningham. You’re listening to a series of podcasts created from the interview material collected as part of Claire’s show, Guide Gods.

[Harmonium plays]

[Interview clip]

Cristina: Well, we’re starting to talk about healing and curing. A very fantastic theologian called Roy Mcroughly.  And he is doing a lot of work in this area—the difference between healing and cure, and the misunderstanding of healing and cure. And, yes, absolutely.  One of the things that we’re trying to address is the damage that is done to the person who is pulled into a community where they’re prayed to be “cured”.  Everybody needs, is in need of healing; that’s different.  That’s about an inner encounter with something transcendent, with something beyond us so that we can learn about ourselves and so that we can learn about God, and so that with God we can learn about each other.  So to bring people into communication, into relationship with God is the ultimate aim of most religions.  The misunderstanding about healing and cure means that we focus, it’s exactly the same, we focus too much on the body and we’re missing the spirit, actually.  So when you pray for cure, you’re not seeing the whole person, you’re seeing a body.  And you’re deciding that that body needs to look different, because they’ve got to be like everybody else.

[Harmonium plays]

Jak: I wanted to talk about, this thing that Cristina said, about articulating the difference between healing and curing, and in particular in that sort of chunk she says “everybody is in need of healing”, and that got me thinking about what the definition of healing is and conversations, other conversations we’ve had around healing and consent. And to me healing is, how can I, make changes or have a learning experience in my life that makes my life more easeful.

And I think the issue when it comes to faith and disability is people project onto disabled people ‘oh well your life would be easier if you could hear’ /or you know, and to them that’s healing, but actually that’s a projected idea of what healing is. When actually healing has to come from the person. And it’s not about fixing or curing as Cristina said, it’s about, um, yeah how can I live with more ease? And that actually might be nothing to do with my disability.

Claire: /Yeah. Yeah, yeah.

Yeah exactly. And that yeah actually what makes like difficult is, is about the way that, yeah, non-disabled people design the world or, actually the difficulties are usually about the, um, the designs that have been put in place for a space or an event, or the lack of expectation that a disabled person will be there, you know. These are the things that make life difficult [laughs].

So, I mean I think yeah there’s something about, I like the way that you put it about yeah, this, how to live your life with more ease.
There’s something about yeah, as you say this notion of projection that people have of another person’s life, what you perceive as difficult, and I think there’s two things that come to mind for me, one is, I think, and I’m not the best person to articulate the details of this, but I guess one is the confusion between disability and illness, I think, is often something that isn’t, a distinction that people aren’t making when it comes to notions of cure and healing. Illness potentially is something that can be healed or cured, and that can, illness can create disability but it isn’t the same thing, you know. To live life as a disabled person is actually, yeah, is a very different sort of journey from what it is to be ‘ill’.

And notions around what people think of as ‘health’, and what is healthy, and what is ‘fit’, this problematic notion of being ‘fit’ and how damaged that idea is. And what it means, you know that it’s very projected as this normative body, notion of fitness, notions of strength, you know, all these things. Also I think there’s confusion in society between what disability and illness are and the mixing up of those two things.

But also when you talk about healing being about finding more ease, I think also there’s an inability quite often particularly from people who don’t experience, you know don’t identify as disabled, an inability to read disabled bodies, and to read their, particularly maybe I talk from the perspective of having a physical impairment so I guess I can, if I specifically tune it in that direction: an inability to read the language of that body and that what people often perceive as struggle is actually just effort, and that those things are very different. Struggle has a narrative and a projection of difficulty, and effort is just about that it needs energy, you know and that needing to put effort into something doesn’t mean it’s necessarily a negative or bad thing. And that, you know for example if I talk from my experience of bodies with physical impairments, that you develop different ways of doing things, you know develop different ways of carrying things, of opening doors, of navigating spaces you know and that people perceive them as difficult and awkward, and it’s like actually quite often they’re not awkward, they’re really beautifully worked out systems of how to do something.

Yeah something I’ve got quite obsessed with is that, that notion of what some people read as ‘awkwardness’ and actually has an elegance and that what we sometimes perceive as being very elegant actually sometimes has awkwardness.

Disabled people have worked out systems for doing stuff, how they put their bag on the back of their wheelchair, you know, how they weigh things down over, in different parts of their chair to carry things or, you know, things like that and actually because, because it’s different from how you might carry something normally, people who can carry things in their hands see it as really awkward and limiting and it’s like no actually this is, this is really, it’s all worked out, it works beautifully, this is that thing I talk about the creativity. But I think it’s that thing of like people, you know, quite often non-disabled people can’t read a disabled body and to recognise when something is difficult or not, and that effort is not the same as struggle, and actually are applying emotions to the way somebody is moving, you know like, to apply struggle is an emotional projection /or suffering, exactly. As opposed to it just being about energy and technique, and I think those things are similar to the confusion between illness and disability, you know, there’s not really effort made sometimes by people to kind of break down what they’re looking at or experiencing when they meet another person.

Jak: /Of suffering.
I think it comes back to that thing of projected needs, projecting when someone needs help opening the door and when actually like ‘nah they got this’. And it actually makes me think of, um, a specific moment in the show, which, which actually I hadn’t thought about until I saw it the second time, because I think, because I’ve worked with you before and I’ve got used to seeing the way you move, and maybe someone that hasn’t seen that finds it more unusual or like will see the beauty quicker because they haven’t seen you move before. But, yeah there’s this moment, it’s the moment when you’re moving down the altar steps and you’re holding the tea tray and there’s just a beautiful way that you like hook your foot under each crutch to move it down a step, and I love that moment ‘cause you’re obviously playing with audience expectation and what we expect you’re able, /‘able’ to do. But it’s so gracefully done and like I’m sure I couldn’t do it [laughter] you know. Yeah so talking about that, yeah it, that, yeah very consciously plays on our perceptions of you and what we as an audience might be projecting if we don’t, if we’re non-disabled or we have a different way-

Claire: /Yeah.
-Yeah no absolutely. Yes it was a very conscious choice this, that actually, what we maybe didn’t talk about in the introduction is like actually the material, the physical material in Guide Gods that is used the most is tea cups, so there are tea cups and saucers that are sort of the physical material that are used within the space and go on a little journey of creating images that accompany a lot of the audio material. It starts from first I carry one cup down the stairs, and yeah this thing of like I have developed my own technique of how I carry stuff and I use crutches. And that it might actually be slow but it’s actually very very skilful. It does exactly what it needs to do but it’s quite a different way of carrying a cup down the stairs than somebody who’s walking on two legs, and so I carry one cup and then I carry a tray of six cups and saucers down, and yeah it’s very sort of, for people who don’t me and don’t know my capacity to carry stuff, yeah it is purposefully quite a voyeuristic moment of playing with– and the fact that yeah clearly I’ve chosen objects that have a projection of fragility, of being china and breakable, a bit like myself as well, you know.

And it is interesting yeah of people who come up and talk afterwards about feeling quite conflicted in that moment ‘cause it does press that button of should I help? But clearly they’re in a performance so they know they shouldn’t help, but it purposefully presses on that, that exact question that I think is the place that a lot of the people I interviewed find themself of like people projecting whether they need help or not, and what it is to show somebody a different way of doing something is absolutely valid.

One of the reasons for doing that is also that it is about dropping into what I would call ‘Crip Time’, well not I specifically, but it is a term coming from the Crip community and we’ll maybe touch on that later as to what ‘Crip’ identity is, but this shifting into a time frame that is absolutely about the time I need to move, and it is much slower, you know it takes a long time to bring these cups down and purposefully making people have to wait, and play with the awkwardness of just watching how some– the thing that you’re not supposed to do if you’re doing an entertaining show is you know—But, a purposeful shifting into ‘ah ok, this is the speed my body works at and you’re going to come with me into this speed and you’re going to hopefully start to see the beauty of being in that speed’, rather than ‘oh my God, I wish you’d hurry up’, well I could hurry up but I’ll drop all the cups, so you know. Yeah, bringing an audience into this is my, this is our space, but this is my time, I think is partly what I try and do in Guide Gods.

[Violin plays]

Jak: That sort of leads on nicely to this other thing Cristina says:

[Interview clip]

Cristina: Each and every person according to their own condition and office contribute to the building up of the Body of Christ. So that means that every single person from how they’re created has a place within the Body of Christ. And so the Body of Christ is incomplete without everybody just as they are. So if I’m going to pray for you to be cured, I’m not recognising that your place is already there anyway.  

Jak: Every single person has a place within the body of Christ, and to enforce healing, although I don’t think we can call it healing anymore, but curing or fixing, it negates that entirely and so for me sort of, yeah, goes against what a lot of faith is saying, which is we’re all made under God’s image, made in God’s image so, and that has to include all kinds of bodies.

Claire: Yeah. It’s funny just as you say it, I start to then wonder, what, which I never thought about before, I start to think what blame lies actually in art for the notion of the image of God? You know and the idea of God or Christ as a perfect human body [laughs].

Jak: As a white body.

Claire: Yeah, you know exactly, there’s all these historical problems with-

Jak: -As a dude.

Claire: Yeah. Exactly. To what degree have artists actually also been the cause of these problems? I don’t know. ‘Cause yeah so much of how, particularly in Christian heritage you know so much of it is about, there are representations of God and of Christ, and yeah they’re, exactly they’re white guys. White normative-bodied ‘fit’ [laughs]/ if we’re going to use that problematic term, you know. Yeah exactly, and I really love this point that Cristina brought in of like there’s so much that potentially creates quite a hypocrisy in terms of how people, in terms of what people say they believe in terms of everybody is made within the, everybody is accepted just as they are but at the same time people are pushing a notion of healing or fixing of bodies then yeah absolutely, completely contradicts itself. Yeah I liked what she said a lot.

Jak: /With a six-pack.

[Violin plays]

Claire: But I think my question at the heart of a lot of the research was this overriding question of, if the majority of the population on earth follow some sort of faith, then that means that perspectives on disability within faiths have a huge influence in the world, and therefore if these individuals as parents or as disabled people are within faith communities, what is the support they are being given? What is the advice they’re being given? And when is that, when is, when I encounter it does that feel at times problematic? What are the variety of, sort of, experiences that people have?

Jak: Yeah and it makes me think actually, even if it’s misled, everyone is just trying to grapple with why they’re here. Like why they’re alive and, and why they’re experiencing things the way they are. And actually there’s something else that Cristina says about talk with a participant:

[Violin plays]

[Interview clip]

And one of the questions we asked was “Why do you think you’re in this world?” And he sort of looked at us totally bemused.  And he’s like, and he said, “Because I am.”  
So we reflected on this person’s definition of being in the world “Because I am.”  And we reflected on it, and we actually said, actually, his question to us was, “Why do I have to find a reason why I exist?  I’m here. You accept me.  I’m here, I am.”  That’s it. So we work now from that philosophy of the presence, the essence of the person as not having to fight for the right to be.

[Violin plays]

Jak: And that’s like a simple answer but also a really profound answer/, and I feel like as a queer person, as a trans person, as someone that like experiences anxiety and depression, like I’m constantly asking, I’m always interrogating and sometimes that’s great and sometimes I have to go: When am I interrogating because I’m not accepting this is just the way I am? And yeah when am I looking for answers to try and like make something not be?

And the reality I think, that’s partly also what makes us become artists, every single answer we get just makes us ask another question so we’re not even going in circles we’re just like-

Jak: Digging-

Claire: -We’re digging and digging all the time and that is what is exciting about these subjects, to have done this research, it’s terrifying and it’s overwhelming to open up such issues. But I think, what, if nothing else it taught me that I can’t, I shouldn’t form an opinion actually, in one line, you know there shouldn’t be a way of summing up what I think about any of these things, in one line, and that actually what I might believe will be different in a year and it should be different, because I’ll have talked to other people and I’ll have met other people.

Jak: And that’s presumably why you made the show slash why we make work is because you can’t sum it up in a sentence or in a conversation and I think, yeah, I mean, I would be frustrated if, shows that frustrate me are ones where I’m like you could have told me that in a sentence [laughs].

Claire: Yeah, and that was part of the horror of trying to make the show in a lot of ways was this thing of going you can’t come out of this research with ‘Islam believes this about disability’, ‘Judaism believes this about disability’, and maybe naively, maybe at the beginning I was even, I thought I might get close to something like that. And that, as I did more interviews the realisation of like that’s ridiculous. And learning that, this Muslim believes this and this Jewish person believes this. And it’s funny because what I met was my own hypocrisy and my own naivety because I know these things about disability; I know that if I sit down with somebody else who has even the same medical condition as me, we have a completely different life experience. And you and I know that two people might both use manual wheelchairs, they’ll have some shared experience but they will still be completely different people and I think yeah, it was really vital and really humbling to realise I was making the same prejudicial presumptions about religion, as I get so angry about that people make towards disability. I was doing exactly the same thing of putting people into easy stereotypes.

Jak: Yeah but I think what is possible is to, I think what listening to different people speak did help do was to understand, even though I couldn’t summarise ‘oh yeah this is what Jews believe about disability’ I could say, ah this is like what the institution, in the institutionalised version of the religion, these are the harmful ways that it’s impacting on the world and, but it is also a sort of again chicken and egg situation whereby of course religion has problematic views about disability because society has problematic, is ableist so, that’s, religion is bound to reflect that in lots of ways. Doesn’t mean it should go uncriticised, but…

Claire: Absolutely.

[Violin plays]

Jak: Thanks for listening to this conversation as part of the Guide Gods Digital Collection. If you’ve enjoyed this podcast, please listen to our other conversations via the website.

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