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In this podcast you will experience Claire and I talking, and one interviewee’s reflections as someone living with an invisible disability. We conclude that we need to be attentive to different needs even when they’re not visible.

We discuss how we all have ways of getting through whether we call it religion or not.

#invisibledisabilities #autism #momentsofhealing #surviving

Practices for Survival

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[Violin plays]

[Interview clip]

Interviewee: Right. God loves me and God’s helping me but I have to get on with my day. But I don’t need to be scared of my day because God’s there with me helping me.  So it’s that kind of….  Most days I have to go through that process because most days are very scary. Most days I feel overwhelmed by my autism.  So it’s time-consuming.  

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]

I’m interested in talking about invisible disability, particularly as yeah we’ve spoken a lot about projected healing and when people project needs onto others, and I feel like often when that happens is, within the lived experience of someone with a visible disability because people see the disability and project the suffering. But what it struck me in some other of the conversations that were about invisible disabilities was that often the flip actually is that the needs go unnoticed.

We’ll hear an example of this; an invisible disability going unnoticed, in this reflection from an interviewee.

[Violin plays]

[Interview clip]

Interviewee: We could use autism buddies in worship places, because crowds of people is where an autistic person’s going to feel overwhelmed and excluded because I’m talking to you one-to-one I’m finding it very easy.  But if there were three or four people in the room I’d be lost because there’s a crossfire going on where I can’t interpret the cues, I can’t interact. If you’re autistic and you’re in a place of worship where everybody’s like having a cup of coffee, you can feel completely excluded and you can fall between the cracks and nobody will notice that you’re suffering.  

We need to have autism buddies, we need to have someone in a church or a mosque or a synagogue who’s delegated to look out for the autistic person and to go and befriend that person.  

Claire: Yeah, it’s really interesting because it’s such a simple thing.

Interviewee: Yeah.

Claire: And it’s, yeah it’s… But it also goes to what you imagine is the core of a lot of these/ religions should be.

Interviewee: /Well, yeah.
Well loving your neighbour. Yeah. And that doesn’t mean a sentimental love. That means being very practical and very switched on to, right. Where is this person? What do they need? And to noticing the person.

So that’s the way it should be. We shouldn’t need to have autism buddies.  We should just have a society where we can be each other’s buddies.  But people, only human people get caught up in cliques and people who are not aware of what they’re doing.

[Violin plays]

Jak: How her experience was sometimes that she fell through cracks and that as much as we need to not project needs onto people, it’s also about, inclusion is also about noticing what people need. Yeah it’s not just about physical access or physical exclusion when we’re talking about faith, it’s also about how do we listen to people with different needs? And actually I find her perspective on how she like, survives the day really interesting and enriching.
[Interview clip]

Interviewee: I’ve been living as a Christian for, let me think…
For 40 years and obviously I’ve prayed a lot in that time.  And… I’m not healed and I don’t know if I ever will be.  But at the same time I pray for my healing all the time.  And usually it’s in very small ways.  As I’m aware of some small area that comes up and, where I’m struggling and I will pray about it.  And quite often I look back and say, ‘Well, yes actually that little prayer was answered.’  It’s as if there are little tiny moments of grace.  

I can get very worked up about things and panic, and so for me healing is when I’m in that moment of panic and asking God, ‘Please, will you help me to calm down and make a good decision here?’  And it’s very practical.  It’s very concrete. It can be, ‘Right.  I’m having a really…I’m having a meltdown today. I can’t think straight about anything. What can I do?’ And I’ll sit and I’ll wait and I’ll think, ‘Maybe I could go to the shops and that might make me feel better just to be out of the house and not stuck in my own head.’  And that I would say is an answer to prayer.

[Violin plays]

Jak: In a moment of panic asking God for help and like what can I do next to make myself feel better, and then to her God answers that prayer and puts the idea in her head. And then she goes outside and she feels better, but yeah that could be also given the name of mindfulness, like, I do that.

And yeah, I like these moments of being able to resonate with the way someone, yeah, just practices for survival, for getting yourself out of these headspaces that we all get into. I find that there’s something really, it comes back to empathy of actually sitting and listening to each person and realising ah actually I have more in common with them than I think.

Claire: Yeah and then recognising that we might, we are sometimes doing the same thing but we give it a different name. You know, that we might, many of us might engage in practices where we, we kind of have a conversation in our heads, or we, we’re asking the universe or we’re asking, we’re asking ourselves, you know sometimes I think I’m just having a conversation with myself but, maybe there are ways in which that parallels for some people the act of prayer, you know. And yeah as you say for some people that’s become something that gets called mindfulness or different practices but actually when we come down to it and we actually sit and find, sit and really listen to each other we find that we’re doing the same thing…. And that whereas, you know maybe in my, previously I would’ve been quite cynical about the notion of prayer as a, I think, you know as a, as an act or, or not really understanding it, the purpose it serves for people. I think I start to see that there are ways in which those practices are in our lives but we don’t recognise it, we don’t name it. We choose not to name it in that context. I think that’s been quite important to recognise that there are practices I have as an artist that are the same as, they’re the same ethos as what somebody’s doing, practicing through their faith, and we just give it different names.  

I mean for me what I’ve found, I guess what I started to realise from talking to all these people was that actually, what I, that, that art making, being a maker of performance, or choreography, or all the different ways I kinda make work, you know sometimes text, sometimes movement, sometimes song, all different ways, sometimes writing, that at the end of the day I, I get the things from making art and being in an art community that a lot of these people get from practicing a faith, it’s the same sort of, it fulfils the same role in my life. So although talking to these people didn’t make me convert to any faith it made me recognise that I have the same systems in place, from a different perspective it fulfils the same roles.

[Harmonium plays]

Jak: Even though I don’t have the same lived experience as this person I could really relate to quite a few of the things, and I’m also, I don’t necessarily pray to a God everyday but there’s parts where she was talking about God as comfort, and God as her friend, in, yeah in what is like loneliness, when she feels lonely or scared, and that that’s actually a different way to look at healing altogether was that she felt that healing was in the small moments where she felt that God was with her. I like this idea of healing as moment to moment rather than a huge miracle.

[Interview clip]

Interviewee: A lot of my religion is about comfort and solace for the times when I can’t interact with the world the way I would like to do. So I have God as a friend when it’s often a very friendless life.  But it’s also difficult because I realise that in any faith you have to have compromises and I can’t make those compromises. So I sometimes feel that God is my only friend, you know?  

[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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